3 Year Old with VERY high antibodies

[brooke12]

I recently discovered I have celiac disease. I have suspected that my 3 year old daughter has it as well so I had her tested. 

Her labs came back SO HIGH! Ttg >100 EMA titer 1:640. Yes, SIX HUNDRED FORTY!!!!

My doctor is obviously very uneducated on celiac disease. I had to diagnose myself and he gave no advice or insight on my daughter's high results except to say that "celiac disease is likely". I had to ask for a referral to a pediatric gastroenterologist.  I am waiting to hear back. In the meantime, I am looking for information and advice for helping her heal. Does anyone have experience with such high levels? Will they be harder to bring down? I've read that some people have issues with rice and oats (gluten free). Should she be avoiding those? Should I have her undergo further testing for any other health issues or allergies? Should I be concerned that she is only 3 and has such high levels? 

 I would like to start doing everything I can while waiting to see a gastroenterologist. The doctor gave me nothing other than the positive diagnosis. I would LOVE any advice and suggestions for my little one. 

Currently, I am giving her a strong probiotic daily. A multivitamin. Vitamins C and D. Digestive enzymes after meals. She drinks a lot of water and loves kombucha. She still has diarrhea and complains of belly aches after almost 2 weeks gluten free. 

[pschwab]

We had a very similar experience with our two year old 6 months ago. He was having stomach aches, weird bowel movements and random vomiting episodes. His ttg levels from our regular pediatrition came back at 300 which made him suspect celiac and we were referred to a pediatric gi doctor. They couldn't get us in for over a month so I called our pediatrition back to express my worry and frustration over the long wait. Our pediatrition called the gi office and they managed to find us an appointment that week. (Eye roll) The gi dr said with the high level of ttg we had two options.

1) get genetic testing and if the gene for celiac was present, that would be sufficient combined with the high level of ttg to give a positive celiac diagnosis. The disadvantage of that was the cost of the testing. The advantage was we could start a gluten free that day to help him feel better.

2) Keep him eating gluten for at least two more weeks until they could get him in for a biopsy. Cheaper but he'd be sick for that much longer. Plus the actual biopsy process on our kiddo.

We chose the genetic testing so we could immediately start going gluten free. If you are planning to have your kiddo go through the biopsy, you need to keep her eating gluten until then. Our son was deficient in a couple vitamins so we were told to supplement those through multivitamins. Target brand (up and up) are gluten free and taste similar to flintstone vitamins. Milk and oats can be a real issue, but our kiddo has been fine with both. When in doubt I would avoid at least the oats with her. There is hope though in bringing down her high levels! We had our son's ttg levels retested 3 months after starting his exclusive gluten free diet and he was down to 71! We noticed an immediate improvement in his temperament, vocabulary development and overall health within a couple weeks of starting the gluten free diet. In my humble opinion (not an expert by any means) her levels are so high because she's little. Her body is small so it processes things quickly and she's at a real growth age so everything is working so hard. I think that lets the gluten hit them hard and raise the ttg levels. But I also hope that means the recovery is quicker because of how hard their bodies work in such a small space. Again, just my opinion. Because of her age, watch art supplies and shampoo for gluten as well. If she still puts her hands in her mouth like our guy, that can be stressful. I would try calling your pediatrition to see if he or she could help get you in to see the gi dr earlier. Good luck and best of wishes for your family!!

[ravenwoodglass]

It is very important that you get her back on gluten immediately. She needs to be still on gluten for any blood work or an endoscopy that the GI will want to do. Call the Gi's office and ask to speak with a nurse and tell them about the probiotic, vitamins and digestive aids that you are giving her. The doctor may want to run vitamin panels and the supplements could interfer with getting her correct levels. The nurse will likely need to call you back after he/she talks to the doctor.  She can get probiotics from the Kombucha, yogurt, saurkraut or any other fermented food.

I am not a fan of using the gene tests as part of the diagnostic process. There are cases when diagnosed celiacs have not carried the most common celiac associated genes. While it is rare I am one of them.  Research is still going on concerning all the genes associated with the condition. It wasn't until a few years after I was diagnosed the my gene finally was recognized as associated.

I hope the GI gets you in soon. Do make sure to keep up with the gluten. Just a couple pieces of bread worth of gluten should be enough.  It is very important she have a formal diagnosis for accomodations at school, hospitals etc.

[squirmingitch]

12 minutes ago, ravenwoodglass said:

It is very important that you get her back on gluten immediately. She needs to be still on gluten for any blood work or an endoscopy that the GI will want to do. Call the Gi's office and ask to speak with a nurse and tell them about the probiotic, vitamins and digestive aids that you are giving her. The doctor may want to run vitamin panels and the supplements could interfer with getting her correct levels. The nurse will likely need to call you back after he/she talks to the doctor.  She can get probiotics from the Kombucha, yogurt, saurkraut or any other fermented food.

I am not a fan of using the gene tests as part of the diagnostic process. There are cases when diagnosed celiacs have not carried the most common celiac associated genes. While it is rare I am one of them.  Research is still going on concerning all the genes associated with the condition. It wasn't until a few years after I was diagnosed the my gene finally was recognized as associated.

I hope the GI gets you in soon. Do make sure to keep up with the gluten. Just a couple pieces of bread worth of gluten should be enough.  It is very important she have a formal diagnosis for accomodations at school, hospitals etc.

Ditto this!

[brooke12]

Thank you all for your advice! I'm glad I posted. I finally got our PCP to send a referral today. I'm certain that my daughter has celiac. She snuck some Ritz crackers at preschool today (first gluten in 2 weeks) and has been in so much pain the last few hours. I wouldn't want to subject her to the gluten challenge but hadn't thought about needing a diagnosis. Ugh. I'll call the GI tomorrow and talk to the nurse. 

Thank you thank you!!! Your advice and shared experiences really mean so much!

[DrMommy09]

Our 3 year old is in the same boat. Trying to decide if endoscopy is necessary. Waiting for call back from GI doc. Hope your daughter is doing better!

[Sienna2013]

In case it's helpful to know, my daughter's TTG came back at over 3,000. (Not a typo; reference range 0-20 is negative, 20-30 is weak positive, >30 is positive, and they stop counting at 3,000.)  The ped GI at the local nationally known teaching hospital did not require endoscopy, but diagnosed her based on that lab, a second set of labs which had the same numbers and also showed positive for genetics.

It's been a week gluten-free and we're seeing some improvement, but poor kid is going to take a while to feel well. Her primary symptoms were stomach aches and extreme anxiety - it was her therapist who actually suggested the celiac screen. (For which we are forever grateful!)