Positive TTG IgG and advice please!

[Ladybug99]

This is our very long back story and then can I get some advice? (This is long. For a summary skip to ***) 

My daughter will be 6 in April and she possibly has celiac. 

At about a year old she was diagnosed FTT. At that time we suspected celiac and at 18 months old we went through with a endoscopy/colonoscopy. It all came back negative. She wasn’t eating much gluten at the time. 

She’s always been small/low percentile and grows slowly. 

Around four years old we again suspected celiac/gluten sensitivity due to symptoms including: growth issues, blood in stool, abdominal pain, persistent low grade fever, some vomiting, joint pain, behavior issues. 
Labs were negative. We did the genetic test and she carries half of one of the genes. (1 in 200 chance to have celiac but GI wasn’t convinced) 
We went gluten free anyway and noticed a change in symptoms and she grew!! Went from below 10% to just about 20%. Although at the time I wasn’t convinced it was related to gluten (denial?) and slowly reintroduced gluten. She seemed to do okay. 

I am confusing myself on timing but at one point we also were experiencing a weird, bad rash. Almost like hives but definitely not hives. I thought it may have been related to gluten but never could confirm. Doctors thought she probably had a Mast Cell issue. This all just suddenly stopped on its own day. (Strange!) 

Now my son is being treated for short stature and possibly had growth hormone deficiency. Since my daughter hasn’t grown since that big spurt and is back down to the 3-5% we checked a bone age scan and she is pretty delayed. She’s almost 6 and her bones are about 3.5-4 year old. 
So we started the process to refer to endo for growth issues like my son. However one of the blood tests came back positive! It was the TTG IgG (but it was only slightly positive) The TTG IgA and IgA serum were both normal.

***So in summary: She has a half of one of the genes, a slightly positive IgG and decrease in symptoms/increase in growth when gluten free. 

Now for my question!! What would you do?! I feel like I have three options:
1. Assume mild celiac and go gluten free, follow growth and watch symptoms. 

2. Head back to GI (for the third time) and consider a biopsy. 

3. Continue endo referral to look into growth knowing they may bounce us back to GI anyway. 

And my last question: should we check her TTG EMA? 

Sorry I know that’s a lot but I would appreciate any advice or experience you may have!

[cyclinglady]

On 1/9/2018 at 4:24 AM, Ladybug99 said:

This is our very long back story and then can I get some advice? (This is long. For a summary skip to ***) 

My daughter will be 6 in April and she possibly has celiac. 

At about a year old she was diagnosed FTT. At that time we suspected celiac and at 18 months old we went through with a endoscopy/colonoscopy. It all came back negative. She wasn’t eating much gluten at the time. 

She’s always been small/low percentile and grows slowly. 

Around four years old we again suspected celiac/gluten sensitivity due to symptoms including: growth issues, blood in stool, abdominal pain, persistent low grade fever, some vomiting, joint pain, behavior issues. 
Labs were negative. We did the genetic test and she carries half of one of the genes. (1 in 200 chance to have celiac but GI wasn’t convinced) 
We went gluten free anyway and noticed a change in symptoms and she grew!! Went from below 10% to just about 20%. Although at the time I wasn’t convinced it was related to gluten (denial?) and slowly reintroduced gluten. She seemed to do okay. 

I am confusing myself on timing but at one point we also were experiencing a weird, bad rash. Almost like hives but definitely not hives. I thought it may have been related to gluten but never could confirm. Doctors thought she probably had a Mast Cell issue. This all just suddenly stopped on its own day. (Strange!) 

Now my son is being treated for short stature and possibly had growth hormone deficiency. Since my daughter hasn’t grown since that big spurt and is back down to the 3-5% we checked a bone age scan and she is pretty delayed. She’s almost 6 and her bones are about 3.5-4 year old. 
So we started the process to refer to endo for growth issues like my son. However one of the blood tests came back positive! It was the TTG IgG (but it was only slightly positive) The TTG IgA and IgA serum were both normal.

***So in summary: She has a half of one of the genes, a slightly positive IgG and decrease in symptoms/increase in growth when gluten free. 

Now for my question!! What would you do?! I feel like I have three options:
1. Assume mild celiac and go gluten free, follow growth and watch symptoms. 

2. Head back to GI (for the third time) and consider a biopsy. 

3. Continue endo referral to look into growth knowing they may bounce us back to GI anyway. 

And my last question: should we check her TTG EMA? 

Sorry I know that’s a lot but I would appreciate any advice or experience you may have!

 

Let me state that I am not a doctor, but just a celiac who is a Mom.  

1.  No,  if possible, have her blood work checked again (full panel) and consider the biopsy (please make sure she has been eating gluten for 4 weeks daily prior to biopsy).  Why?  Obtaining a 504 educational plan can be helpful while a school or university.   My hubby went Gluten Free 12 years prior to my diagnosis per the poor advice of his GP and my allergist.  Oh, it worked, but he will tell you that I get WAY more support from medical, family and friends.  The diagnosis also really helps you adhere to the diet as it is hard to dispute  a lab result (no doubt).  Yes, if you can get a GI to give you a diagnosis based on her previous improvement to a gluten free diet and her positive TTG IgA.  Again, documentation can be much easier for them to give up gluten and stay off it for life (think teen years).  

2. I would have my child biopsied, but would ask for the entire celiac antibodies panel (must be on gluten daily for 8 to 12 weeks) first.     I insisted on it for my own kid.  Include the EMA and the DGP.  I test positive only to the DGP IgA even in follow-up testing.  If my doctor had only run the TTG, my diagnosis would have been missed.  Some insurers/providers only order the TTG tests.  My providers PCPs can not order the entire celiac panel (found that out when I joined their network).   Yes, it is all about cost reduction.   The TTG is a good test but it does not catch all celiacs.  And in studies the DGP test is better with very small children.  Here is more information.  This website is run by a forum member who is a preemie doctor and has celiac disease.  She advocates for celiacs. Take it to your doctor for proof.  Bet yet, email them (use patient portal).  There is nothing like the power of the written word.  They legally must respond and no doctor likes a lawsuit.  

http://www.thepatientceliac.com/2013/04/18/update-on-celiac-disease-screening-in-infants-and-toddlers/

3.  Again, I am not a doctor, but I would firmly rule out celiac disease because you had a positive.  It only takes one positive on the panel!  

4.  Yes.  Get the ENTIRE panel.  Know that some celiacs are seronegative.  In that case, proceed to a biopsy.  Make sure  your GI is celiac-savvy!  That he takes the appropriate amount/location of biopsies.  

Read through the children’s section.  You will see that the endoscopy is not as scary as you may think.  Parents seem to never regret it.  This might put you at ease.  

Your children might not have celiac disease.  Maybe it is related to Mast Cell or whatever.  But you should firmly rule out celiac disease.  

Are there any celiac centers near you?  

Please keep advocating for your children!