Feel Like There Is No Answer

[Brit1612]

I have asked for help on here before, and have since went to another GI (much more knowledgeable and thorough) for a second opinion.  I was under a different username before but something happened with my email and I could not figure out how to get back in.

 

Anyways, I feel like we will never get an answer.  My just turned 2 year old has had "loose stools" for almost a year now (since about 14 months old / just after beginning table foods).  For about 5 to 6 months he did not grow, and was rapidly falling down the charts.  He has been gluten / lactose free now for about 4 and a half months, and has since "caught up" in growth, but the poop is still loose and he is still having stomach pains.

 

The new GI ran some more test (even though we were gluten free - to get a baseline), and now I am even more baffled.

 

-ttg - iGg was a 7.5 (before going gluten free) and is now a 15 (after 4 months of gluten free). <6 negative

-reducing substance test is still positive (dairy free)

-his IGA is also low which is making things even more challenging

-his endoscopy was negative at 18 months

 

What does this all mean???  I have the 6 week follow up on Dec 1st.  But she seems baffled by the increase in ttg igg and does not seem to think it necessarily means celiac.  The increase of growth seems to indicate that we are on the right track, BUT the increased igg and the continuous loose stools seem to go against that.  Any advice / thoughts????  Thanks in advance.

[nvsmom]

Welcome back.  

 

That is very odd that his tTG IgG went up after being gluten-free.  I would assume he is still getting gluten somewhere or something else is elevating it still.... To be honest, I've never seen a test result double after going gluten-free - I'm at a bit of a loss.

 

The tTG IgA can get a false negative if the patient had thyroiditis, crohn's, colitis, diabetes, chronic lver disease or a serious infection - could any of those apply to your son?

 

Did they ever do the DGP IgG or the EMA IgG? And if so, what were the results?

[Brit1612]

They did the DGP with this new GI but it was after being gluten free and came back negative. As far as those other diseases go, I am not sure, as far as we know he doesn't have any of them. They did some poop test that had to do with the liver and it came back normal, not sure that he has ever been tested for diabetes. My ped is also very knowledgable about these issues and seems completely baffled and very interested in my son's case. I think they are probably going to have us do a gluten challenge, but in the meantime, I feel so confused. Also, he is pretty behind with his speech, so we were just referred to a speech therapist.

Thanks for any help, suggestions, etc.

[StephanieL]

Were these labs done through the same laboratory?  That can be a big difference.  What did the biopsy say?

[RMJ]

Were the TTG IgG tests run by the same lab? Different labs may use tests made by different manufacturers which have different normal ranges.

[Brit1612]

No they were not done the same day, but I did ask about the levels.  Both test had a cut off of <6 being normal, between 6 and 8 being weak positive and >9 being a positive.  They said the biopsy was completely normal, they are supposed to be sending everything to the new GI for a second opinion, but they are yet to do that.  Also, they only took 4 samples, which I now know is probably not enough.

[BlessedMommy]

So, either way his Ttg was positive.... I have no explanation on why it would double after going G.F. though.

[Brit1612]

What else can cause the positive level, or even the increase in level, other than celiac??  Should we be looking in another direction or is celiac still a likely cause?

[StephanieL]

I would look into the labs before starting to explore other issues.  

 

It isn't about them being taken the same day, its about what lab was used. Was it drawn at the same Dr/hospital?  If they were different labs they may use different testing methods and get vastly different results (though not common it can happen).  I would see if they can do another draw with enough to have sent to a second lab for verification and then see where you stand. 

 

[Brit1612]

Sorry, I missed typed.  Didn't mean to say same day, meant same lab.  They were taken over 6 months apart at different labs, but the "normal ranges" were the same at each lab.  I guess what I am thinking was even if there was some kind of error, it is still positive either way.  Even on a gluten free diet.

[StephanieL]

I am not saying that this is common but we have had labs drawn at the same time sent to 2 labs and come back one positive and one negative.  

Again, not normal by any means but I would start with getting it sent to 2 different places when drawn at the same time. 

[SMRI]

I would focus on the low total IgG, if that is what you mean by low IgG.  I would take him to an immunologist or infectious disease specialist that specializes in immune deficiency.  Is he sick a lot, other than the GI stuff?  Your IgG is kind of like your army to fight off various infections, sort of.  Within the IgG there are 4 subclasses and subclass 3 is all the GI stuff.  Symptoms are very much like Celiac.  It's possible that when he had the first round of testing that his IgG3 was different (those numbers are very mobile) and that could be the reason for the difference in test results.  He could still be Celiac, but you might be dealing with an immune deficiency.    Open Original Shared Link

[Brit1612]

I would focus on the low total IgG, if that is what you mean by low IgG.  I would take him to an immunologist or infectious disease specialist that specializes in immune deficiency.  Is he sick a lot, other than the GI stuff?  Your IgG is kind of like your army to fight off various infections, sort of.  Within the IgG there are 4 subclasses and subclass 3 is all the GI stuff.  Symptoms are very much like Celiac.  It's possible that when he had the first round of testing that his IgG3 was different (those numbers are very mobile) and that could be the reason for the difference in test results.  He could still be Celiac, but you might be dealing with an immune deficiency.    Open Original Shared Link

I think you may have misunderstood what I was saying. He has an elevated (even more after gluten free diet) ttg-igG , which is causing us to be even more confused. I also mentioned that his total IGA is low, making the iga based test unreliable. Were you referring to the low iga? Thanks everyone!

[Gemini]

You said the DGP was normal and that is the test which tests for dietary compliance. The actual number is important with this test because the lower the number, the better dietary compliance is.

If the tTg-IgG is elevated while the DGP is not, then I would look for other autoimmune related problems to Celiac which may be going on because, as was mentioned earlier, certain other related conditions can elevate tTg. Usually it's the IgA which is elevated with other conditions but if the overall Total IgA is low to begin with, then there might be a deficiency so it wouldn't probably elevate with other conditions. People then look to the IgG testing for answers.

I have Hashi's thyroid disease also and it took awhile for my tTg-IgA to come into normal because of that. My testing for dietary compliance, which was the AGA-IgA and IgG back when I had it done, came down to really low numbers after 1 year gluten-free. The longer I was gluten-free and my thyroid calmed down, the lower my tTg got. I am not sure if other related conditions would raise IgG but it's worth looking into.

[SMRI]

I think you may have misunderstood what I was saying. He has an elevated (even more after gluten free diet) ttg-igG , which is causing us to be even more confused. I also mentioned that his total IGA is low, making the iga based test unreliable. Were you referring to the low iga? Thanks everyone!

 

Yes, the low TOTAL IgG.  There should be a number with a wide range like 340-949 or something (I just made up those numbers).  Then, they can also test for the 4 subclasses that make up the total IgG,  Being low in Sub-Class 1 is fairly rare but likely in his case since it's the biggest subclass and his overall total is low.  Then the other 3 subclasses are probably low as well.  Even though Celiac tests for an IgG, it's not really the same thing as an immune deficiency.  Click on the link I provided above and you will find more information there.  Again, is he sick other than GI issues, lots of colds, upper respiratory stuff (bronchitis, pneumonia, etc.)?

[Brit1612]

You said the DGP was normal and that is the test which tests for dietary compliance. The actual number is important with this test because the lower the number, the better dietary compliance is.

If the tTg-IgG is elevated while the DGP is not, then I would look for other autoimmune related problems to Celiac which may be going on because, as was mentioned earlier, certain other related conditions can elevate tTg. Usually it's the IgA which is elevated with other conditions but if the overall Total IgA is low to begin with, then there might be a deficiency so it wouldn't probably elevate with other conditions. People then look to the IgG testing for answers.

I have Hashi's thyroid disease also and it took awhile for my tTg-IgA to come into normal because of that. My testing for dietary compliance, which was the AGA-IgA and IgG back when I had it done, came down to really low numbers after 1 year gluten-free. The longer I was gluten-free and my thyroid calmed down, the lower my tTg got. I am not sure if other related conditions would raise IgG but it's worth looking into.

Thank you for the info.  We are going to be testing everything this time, but now I am in the waiting game for the next 2 months.  Just put him back on a "normal" diet (besides dairy) for the gluten challenge.  Then she is running all kinds of blood work and likely doing an upper and lower GI a week later (as soon as the blood results are in).  Can you give me some insight on what "other immune" problems could be causing the ttg -igg to be elevated?  I have heard reasons for the ttg iga to be elevated but there doesn't seem to be much info out there on elevated ttg igg.  Thanks in advance!

[Brit1612]

Yes, the low TOTAL IgG.  There should be a number with a wide range like 340-949 or something (I just made up those numbers).  Then, they can also test for the 4 subclasses that make up the total IgG,  Being low in Sub-Class 1 is fairly rare but likely in his case since it's the biggest subclass and his overall total is low.  Then the other 3 subclasses are probably low as well.  Even though Celiac tests for an IgG, it's not really the same thing as an immune deficiency.  Click on the link I provided above and you will find more information there.  Again, is he sick other than GI issues, lots of colds, upper respiratory stuff (bronchitis, pneumonia, etc.)?

I'm sorry I am not trying to be difficult or ignorant, but I still don't think we are talking about the same thing.  He has NEVER had his total IgG tested.  He has had his total IgA (which was a 19, we were told 25 was normal for a kid his age).  Am I just not understanding something????  

 

I did ask for his total IgG to be tested with this next round of bloodwork, but that is not going to be for another 7 or 8 weeks, after we have completed the gluten challenge that we just began.

 

To answer your other question......as a little guy he did have quite a few ear infections, some wheezing problems, a couple respiratory infections and always had boogers and a cough as an infant, but these things seemed to just go away as he got a little older (even before going gluten free).  I am headed to read the link you suggested now.  Sorry if I am just not understanding or if I am just ignorant to what you are saying.  Thanks for the help.

[SMRI]

I'm sorry I am not trying to be difficult or ignorant, but I still don't think we are talking about the same thing.  He has NEVER had his total IgG tested.  He has had his total IgA (which was a 19, we were told 25 was normal for a kid his age).  Am I just not understanding something????  

 

I did ask for his total IgG to be tested with this next round of bloodwork, but that is not going to be for another 7 or 8 weeks, after we have completed the gluten challenge that we just began.

 

To answer your other question......as a little guy he did have quite a few ear infections, some wheezing problems, a couple respiratory infections and always had boogers and a cough as an infant, but these things seemed to just go away as he got a little older (even before going gluten free).  I am headed to read the link you suggested now.  Sorry if I am just not understanding or if I am just ignorant to what you are saying.  Thanks for the help.

 

Ok, insert head smack here--yes, I read IgG was low, not IgA..sorry.  I would still look at that as a possible cause though. There really isn't anything they can do for a low IgA so know that.  Our daughter is supposed to up her protein intake because that carries the IgA protein but it just is what it is.  IF his IgG is low either overall or within a subclass, depending on how low, there are some replacement therapies available.  Low IgG subclass 3 has very similar symptoms to Celiac but if that number is low and he is still registering a positive, he no doubt is Celiac.   

[Gemini]

Thank you for the info.  We are going to be testing everything this time, but now I am in the waiting game for the next 2 months.  Just put him back on a "normal" diet (besides dairy) for the gluten challenge.  Then she is running all kinds of blood work and likely doing an upper and lower GI a week later (as soon as the blood results are in).  Can you give me some insight on what "other immune" problems could be causing the ttg -igg to be elevated?  I have heard reasons for the ttg iga to be elevated but there doesn't seem to be much info out there on elevated ttg igg.  Thanks in advance!

I am sorry you are going through all this as it is beyond frustrating.  The more common associated conditions that can trip the IgA-tTg are thyroid disease, autoimmune liver disease, Crohn's Disease or Type 1 diabetes.  This does not mean a person has them, as you know, but the possibility is there.  You are also correct in that there is little out there with regards to IgG-tTg and what an elevated number may mean.  However.......

 

Testing is such a crapshoot in a 2 year old as they do not have a mature immune system.  This is why people go years before a diagnosis can be officially made because it can take years for enough damage to occur and for the immune system to mature to obtain a valid test.  But you have some positives here.  Your son's growth changed for the positive on the gluten-free diet.  I know there is still a problem with loose stools but that can take awhile to go away completely AND there could be additional food issues that haven't been pinpointed yet. 

 

My niece has a now 11 year old son who had Celiac related issues from birth.  I was diagnosed with Celiac shortly after he was born.  He was scoped at the age of 2 and the GI doc (who was an idiot as far as I am concerned) said no celiac.  His duodenum was inflammed but of course, in a 2 year old, good luck finding damaged villi.  So, he counseled against the gluten-free diet.  Honestly,where do these people get their licenses to practice medicine?????? I am this child's blood related aunt and I nearly died from undiagnosed Celiac. His duodenum was inflammed and he counsels against the gluten-free diet as a trial?  My niece, unfortunately, is one of those who believe whatever the guy in the white coat says so he was never placed on a gluten-free diet. This kid had severe muscle weakness in his neck and could not lift his head as an infant until much later than many because of it.  He is so undersized, it is not funny...he is the same size as his 7 year old brother.  He has since developed asthma and has developmental problems.  So, he is now in the "honeymoon" phase of Celiac and some of his symptoms have receded from meds and the hormones that are starting to kick in.  It drives me absolutely crazy to see this and still no gluten-free diet being tried and he is the size of a 7 year old.  They think he is getting better because symptoms often go away during the teen years, only to return with a vengeance later in life....just like me.  This poor kid is going to wake up one day with a multitude of AI problems and crappy health all because some arrogant GI couldn't find damaged villi when he was 2 years old and he didn't trip the blood test then.  I don't even think they have retested him since and I just wanna scream, at times.

 

I think it a good thing you are doing what you can do to have your son tested but if everything comes back without clear answers, I would say put him back on a strict gluten-free/dairy free diet and see what happens.  Four months is not very long to get any definitive answers, even in a 2 year old but the growth thing is saying something to you.  Test away for now and let us know what the outcome is.  Hang in there because sometimes, this takes longer than we like! 

[Brit1612]

I am sorry you are going through all this as it is beyond frustrating.  The more common associated conditions that can trip the IgA-tTg are thyroid disease, autoimmune liver disease, Crohn's Disease or Type 1 diabetes.  This does not mean a person has them, as you know, but the possibility is there.  You are also correct in that there is little out there with regards to IgG-tTg and what an elevated number may mean.  However.......

 

Testing is such a crapshoot in a 2 year old as they do not have a mature immune system.  This is why people go years before a diagnosis can be officially made because it can take years for enough damage to occur and for the immune system to mature to obtain a valid test.  But you have some positives here.  Your son's growth changed for the positive on the gluten-free diet.  I know there is still a problem with loose stools but that can take awhile to go away completely AND there could be additional food issues that haven't been pinpointed yet. 

 

My niece has a now 11 year old son who had Celiac related issues from birth.  I was diagnosed with Celiac shortly after he was born.  He was scoped at the age of 2 and the GI doc (who was an idiot as far as I am concerned) said no celiac.  His duodenum was inflammed but of course, in a 2 year old, good luck finding damaged villi.  So, he counseled against the gluten-free diet.  Honestly,where do these people get their licenses to practice medicine?????? I am this child's blood related aunt and I nearly died from undiagnosed Celiac. His duodenum was inflammed and he counsels against the gluten-free diet as a trial?  My niece, unfortunately, is one of those who believe whatever the guy in the white coat says so he was never placed on a gluten-free diet. This kid had severe muscle weakness in his neck and could not lift his head as an infant until much later than many because of it.  He is so undersized, it is not funny...he is the same size as his 7 year old brother.  He has since developed asthma and has developmental problems.  So, he is now in the "honeymoon" phase of Celiac and some of his symptoms have receded from meds and the hormones that are starting to kick in.  It drives me absolutely crazy to see this and still no gluten-free diet being tried and he is the size of a 7 year old.  They think he is getting better because symptoms often go away during the teen years, only to return with a vengeance later in life....just like me.  This poor kid is going to wake up one day with a multitude of AI problems and crappy health all because some arrogant GI couldn't find damaged villi when he was 2 years old and he didn't trip the blood test then.  I don't even think they have retested him since and I just wanna scream, at times.

 

I think it a good thing you are doing what you can do to have your son tested but if everything comes back without clear answers, I would say put him back on a strict gluten-free/dairy free diet and see what happens.  Four months is not very long to get any definitive answers, even in a 2 year old but the growth thing is saying something to you.  Test away for now and let us know what the outcome is.  Hang in there because sometimes, this takes longer than we like! 

Thank you so much for the thoughtful response.  It is just frustrating to have an abnormal test result that the doctors can't seem to explain.  She still seems to think that it is celiac, but if so, then why did his ttg igg double on a gluten free diet?!  It is just hard to not know what is going on with your little one, especially since he can't even talk.  I agree that testing a 2 year old is a crap shoot.  Our new GI agreed that his first endoscopy may have just been too early (he was only 18 months then), but she seems to think that she should find something when we do it again in February (he will be 27 months then), she also said she is going to do 8 biopsy to try and guarantee that we don't miss anything.  (The old GI only did 4!)

 

Sorry to hear about the little boy, you would think trying the diet couldn't hurt anything, if there was any doubt about the diagnosis.  

 

He has been back on gluten for a little over a week now.  The first few days, I thought he was have no side effects of going back on a gluten diet, but over the first 9 days he has only pooped 3 times.  The first 2 times were sludge, like always, this last one was very hard (but still the pale color) and he had a hard time going.  This may not sound like a big deal, but typically he poops 3 (or more) times a day.  Is this a sign that the gluten is affecting him, or could it just be a change in diet in general?  Thanks for any insight!

[Brit1612]

If anyone is still reading this thread..... I am curious to the reaction he is having going back on gluten.

 

He has been back on gluten for a little over a week now.  The first few days, I thought he was have no side effects of going back on a gluten diet, but over the first 9 days he has only pooped 3 times.  The first 2 times were sludge, like always, this last one was very hard (but still the pale color) and he had a hard time going.  This may not sound like a big deal, but typically he poops 3 (or more) times a day.  Is this a sign that the gluten is affecting him, or could it just be a change in diet in general?  Thanks for any insight!  I know that constipation can be a symptom for celiacs, but it has never been a problem for him.  It has been diarrhea for almost a year now, extreme while on gluten, but still going on even when he was gluten free.

[BlessedMommy]

Each doctor seems to have their own way of diagnosing. It seems like if there is a conflict between the information gained between the tests, the trial gluten free diet should be tried. I know of someone who had, if I remember right, symptoms of celiac, negative bloodwork, positive genetics, and a mildly positive biopsy, or something like that. The doctor told him to try gluten free for 8 weeks. The guy did and started having symptom resolution and feeling better, then eventually tried gluten again and was in the bathroom all day. The doctor DX'ed him with celiac at that point.

 

The increased constipation definitely could be a sign, especially since it's such a big deviation from his normal pattern.

[Gemini]

If anyone is still reading this thread..... I am curious to the reaction he is having going back on gluten.

 

He has been back on gluten for a little over a week now.  The first few days, I thought he was have no side effects of going back on a gluten diet, but over the first 9 days he has only pooped 3 times.  The first 2 times were sludge, like always, this last one was very hard (but still the pale color) and he had a hard time going.  This may not sound like a big deal, but typically he poops 3 (or more) times a day.  Is this a sign that the gluten is affecting him, or could it just be a change in diet in general?  Thanks for any insight!  I know that constipation can be a symptom for celiacs, but it has never been a problem for him.  It has been diarrhea for almost a year now, extreme while on gluten, but still going on even when he was gluten free.

The symptoms he is experiencing could defintely be from resuming gluten.  ESPECIALLY the pale colored stool....a possible sign of fat malabsorption.  Maybe they could also do some stool testing to check to see if that is happening?  That is an easy test.  Lots of people alternate between constipation and diarrhea with Celiac but the docs like to call that IBS. 

 

I know some docs like to think that they can find damaged villi by a certain age, and I am sure this doctor is trying to help by taking lots of samples but a negative biopsy on a small child does not rule celiac out.  It can take YEARS for damage to accumulate to the point where they hit a sweet spot.  Here is a paragraph from the University of Chicago Celiac Disease center, which outlines what to look for during the biopsy. The increased intraepithelial lymphocytes are often an early indicator so checking for this is very important.

 

 

Definitive diagnosis depends on a positive small bowel biopsy and a demonstrated response to a gluten-free diet. Diagnostic criteria include architectural changes in the small intestine, including mucosal villous atrophy with crypt hyperplasia and increased intraepithelial lymphocytosis. The rate of change may be slow and the changes nonspecific.

[Brit1612]

The symptoms he is experiencing could defintely be from resuming gluten.  ESPECIALLY the pale colored stool....a possible sign of fat malabsorption.  Maybe they could also do some stool testing to check to see if that is happening?  That is an easy test.  Lots of people alternate between constipation and diarrhea with Celiac but the docs like to call that IBS. 

 

I know some docs like to think that they can find damaged villi by a certain age, and I am sure this doctor is trying to help by taking lots of samples but a negative biopsy on a small child does not rule celiac out.  It can take YEARS for damage to accumulate to the point where they hit a sweet spot.  Here is a paragraph from the University of Chicago Celiac Disease center, which outlines what to look for during the biopsy. The increased intraepithelial lymphocytes are often an early indicator so checking for this is very important.

Well the pale (or light yellow colored) poop is something he has had the whole time on the gluten free diet as well.  He hasn't had brown poop in almost a year now (since all of this started).  But the color did change from green majority of the time, to the light brown, pale yellow color that he has had for a while now.  We have done tons of stool test, numerous times, and I believe we did the fat malabsorption one and it was fine.  The reducing substance came back positive both times, so we cut dairy out at the same time we cut out the gluten.  I understand that the damage could take a while to be found.  I am praying that if he does have celiac that the blood test will yield some answers.  He has already had the positive ttg igg, and if one of the other test comes back positive (the first GI didn't even do any others), then I think she will diagnose him without the biopsy being positive.  The only thing is that the blood test are limited since his IGA is low.

 

It just seems weird to me that after a year of loose stools (on and OFF of gluten) he is now very constipated.  Thanks again for all the help!

[Brit1612]

I am having a hard time knowing if the gluten is affecting him or not.

 

While gluten free he was pretty consistent....sludge like like brown / yellow poop. (never went back to normal, even after 4.5 months)

 

Now, during the gluten challenge, the first 1 1/2 weeks he was very constipated (something he has never had before).  Then he went back to pretty much the same loose stools.  Although he has had more little squirts of diarrhea throughout the day.  Sorry for TMI.  

 

Lately I have noticed some slimy looking stuff in his poop (maybe mucus), then yesterday he pooped (or I thought he did), went to change him and it was a glob of pure mucus (about the size of a quarter), kind of yellow in color.  He has not had any obvious changes since the gluten was re-introduced, but maybe the constipation, mucus, and sometimes he seems more irratable than normal (but that is hard to determine when you are talking about a 2 year old that can't talk!)

 

Does it seem like he is reacting to the gluten or not?  Should I be concerned about the mucus?  If this is celiac, would we be seeing more of an obvious change to adding gluten back into his diet on a daily basis?  Thanks again for any insight!