Still Confused....

[brit16]

I posted a few months ago, concerned about my then 18 month old.  He was having chronic diarrhea and did not seem to be gaining weight.  We went through a lot of testing, with no real answers....

 

Test completed:

 

IgG ttg --- 7.5 below 6 was negative (considered slightly elevated)

 

total IGA --- low (can not use IgA based test)

 

reducing substances --- positive (lactose intolerant)

 

Celiac DNA test --- positive

 

Upper GI --- normal

 

We were told no celiac disease (at the moment) but that we could choose to go gluten free if we would like and that we would repeat the upper GI in a few months if symptoms persisted.

 

We chose to go gluten free (and dairy free), honestly hoping that after a few months the symptoms would clear up and that it would have obviously been gluten issues.  But that is not really what is happening.  We have been gluten free since July 8th (2 and a half months now), and there is no clear answer for if it is working or not.  I know it can take a couple months or even longer for symptoms to resolve completely, but I honestly expected something (especially with the poop) by now.  

 

At the time he was having pretty much all green and yellow poop (loose every single time).  Since going on the diet we have not seen much of the "green poop" anymore, but it still is not "normal".  Pretty much NEVER brown and only occasionally firm at all.  But I can say that there has been no more bad stomache cramps that he clearly had before accompanying the loose stools.  I also thought there would be some obvious reactions when there was a slip up with gluten.  we have had a few slip ups and it has not been real clear if they affected him or not.  

 

The other symptom he was having was the slowed growth.  During the time of the testing (BEFORE going off gluten), he actually started gaining weight again, and is continuing to.  BUT he is not getting any taller.... at his 12 month check up he was just under 31 inches which put him close to the 60th percentile I believe, now at 22 months he is right at 32 inches putting him in the 7th percentile.

 

I just don't know what to think now?  I am afraid that focusing on celiac could be causing me to miss some other problem.  From you experienced folks, if he was your child what would you think of everything, what would you do next?????  Thanks in advance!

[Scott Adams]

You may want to explore additional food intolerance issues, but also check past posts on this topic:

 

https://www.celiac.com/forums/topic/56375-failure-to-thrive-and-celiac-disease/

 

https://www.celiac.com/forums/topic/19662-19-month-old-w-failure-to-thrive/

 

https://www.celiac.com/forums/topic/54623-baby-diagnosed-with-failure-to-thrive/

 

https://www.celiac.com/forums/topic/105455-18-month-old-failure-to-thrive/

[brit16]

Thank you for the links..... I read through each one of them.  Just wish I knew if I was "reading into things" or if there is a real reason to be concerned.  Everyone seems to think that he is happy and looks "normal" so he must be fine, but I am not a paranoid mom at all, and I feel like there is something going on.

[brit16]

You may want to explore additional food intolerance issues, but also check past posts on this topic:

 

https://www.celiac.com/forums/topic/56375-failure-to-thrive-and-celiac-disease/

 

https://www.celiac.com/forums/topic/19662-19-month-old-w-failure-to-thrive/

 

https://www.celiac.com/forums/topic/54623-baby-diagnosed-with-failure-to-thrive/

 

https://www.celiac.com/forums/topic/105455-18-month-old-failure-to-thrive/

When you say explore additional food intolerances what exactly are you referring to?  Thanks!  He has not had any allergy testing done, is that something we should be looking into?

[SMRI]

The lack of growth would prompt me to seek further testing.  I'd suggest taking him to the Mayo Clinic.  They will look at him as a whole person vs just a symptom here and there and he will get a complete work up based on symptoms and findings.  It sure beats trying to guess which doctor to see next.

 

As for your labs--did they do a total IgG as well?  If not, I would ask for that, including subclass tests.  It is not unusual for young children to have a low IgA so that may or may not be significant.  

[brit16]

The lack of growth would prompt me to seek further testing.  I'd suggest taking him to the Mayo Clinic.  They will look at him as a whole person vs just a symptom here and there and he will get a complete work up based on symptoms and findings.  It sure beats trying to guess which doctor to see next.

 

As for your labs--did they do a total IgG as well?  If not, I would ask for that, including subclass tests.  It is not unusual for young children to have a low IgA so that may or may not be significant.  

 

Thank you.  I hear people talk about the "Mayo Clinic" all the time, but I guess I really don't know what it is or where it is located.  I will look into that.  We are currently going to "Texas Children's" which is a hospital that people come to from all over, but honestly I have not been impressed with my particular doctor.

 

You are the first person that mentioned the total IgG, I didn't know to suggest that.  He wasn't even going to run the total IgA until I requested that he do so.  Thanks for your help.

[SMRI]

Thank you.  I hear people talk about the "Mayo Clinic" all the time, but I guess I really don't know what it is or where it is located.  I will look into that.  We are currently going to "Texas Children's" which is a hospital that people come to from all over, but honestly I have not been impressed with my particular doctor.

 

You are the first person that mentioned the total IgG, I didn't know to suggest that.  He wasn't even going to run the total IgA until I requested that he do so.  Thanks for your help.

 

Mayo is in Rochester, MN.  There are other branches other places but this is their main clinic.  What differs there is that she will intake to a pediatric endocrinologist or similar.  They will do a complete work up on her, get her history, review past medical records, etc. That appointment takes an hour or two.  They then order tests and schedule appointments with other areas they feel need to see her.  Once you are ready to leave your first appointment you are handed an itinerary of your upcoming appointments.  That changes through the time you are there but its a starting point.  She would probably be evaluated by an immunologist or infectious disease dr with the low IgA readings for further testing, see the GI department because of the ttIgA, etc, etc, etc.  You spend about a week or so at the clinic seeing whomever they think you need to see and all of these dr talk and have access to her tests so they can figure out what is up with her.  While you may suggest treatments or possibilities, it's likely they will already have ordered the tests.  It's an amazing place and the continually rated the best clinic in the world, especially for "odd" conditions.  Not only will you receive world class medical treatment, it's a little United Nations with people from all over the world seeking care there.  There are hotels connected to the hospital as well as all over Rochester--all of which have free shuttles to take you to the clinic or wherever around town.  

[brit16]

Mayo is in Rochester, MN.  There are other branches other places but this is their main clinic.  What differs there is that she will intake to a pediatric endocrinologist or similar.  They will do a complete work up on her, get her history, review past medical records, etc. That appointment takes an hour or two.  They then order tests and schedule appointments with other areas they feel need to see her.  Once you are ready to leave your first appointment you are handed an itinerary of your upcoming appointments.  That changes through the time you are there but its a starting point.  She would probably be evaluated by an immunologist or infectious disease dr with the low IgA readings for further testing, see the GI department because of the ttIgA, etc, etc, etc.  You spend about a week or so at the clinic seeing whomever they think you need to see and all of these dr talk and have access to her tests so they can figure out what is up with her.  While you may suggest treatments or possibilities, it's likely they will already have ordered the tests.  It's an amazing place and the continually rated the best clinic in the world, especially for "odd" conditions.  Not only will you receive world class medical treatment, it's a little United Nations with people from all over the world seeking care there.  There are hotels connected to the hospital as well as all over Rochester--all of which have free shuttles to take you to the clinic or wherever around town.  

Wow, every clinic should be ran that way!  I know Texas Children's is supposed to be a great hospital, but that is part of my complaint, they don't seem to be getting the whole picture.  When he told me about the low IgA he basically said that he didn't know much about it and that I may want to see an immunologist.  But couldn't even tell me if I needed a referral and basically left it up to me whether or not to see one.

 

Of course we would spend anything on my sons health, but expenses are an issue for us. We would have to fly to Mayo, we are in Texas.  I still feel like maybe he is fine, and I am making something out of nothing..... He is happy, seems healthy, and still appears to be normal size.  His weight is normal, he is just a little short.  But then again, I think about the fact that he has only grown a little over an inch between 12 months and 22 months and that just doesn't seem right to me.  I would like to think that he could get the care he needs here, but it is so hard to know when to move on.  How do you other parents know how long to "wait and see" and how quickly to go to other measures???  Thanks again everyone.

[SMRI]

Growing only an inch during a time when they should be "sprouting up" would be concern enough for me, add in the other symptoms and I'd be on the phone tomorrow.  Yes, it will cost money to go to Mayo, but you can minimize that by driving, etc. if need be.  The Mayo model is pretty unique and after 150 years, I'm surprised more multi-specialty clinics have not adopted a similar practice.  There are Mayo clinics in AZ and FL as well but they are more geared to the elderly and just not as big.  There are extended stay type hotels all over Rochester so you can cook your own food, etc. to help with that cost as well.  Travel for medical treatment also goes toward your overall medical costs and depending on how much you spend, could be a tax deduction.  For a not quite 2 year old, I think it is very important to figure out what is going on and I would not be in the wait and see mode.  If he was 12, maybe I would wait, but not at 2.

[brit16]

Thank you so much for the input.  The things you are saying (too young to be growing that slowly, the test results not being "normal", are the reasons I still feel concerned.)  I guess it is hard to trust your instincts when you have so many people (including doctors) saying everything is fine, we will just wait and see.  When I express my concerns to others they say things like "he doesn't look small"..... He doesn't look small, but that doesn't change the fact that he is growing VERY slowly.

 

I guess my other question is how long does he need to be "gluten free" before we could determine if it is making a difference?  Am I jumping the gun trying to determine "improvement vs no improvement"???? (We went gluten free July 8th - of course there is a learning curve and there have been a few mistakes along the way.)

 

I am seeing a new pediatrician tomorrow who seems pretty knowledgeable (had a chance to speak with him outside the office about my son).  If I don't feel comfortable with his "plan of action" then I will look into Mayo further.  Thanks again.