Push For Diagnosis Or Just Wait?

[KenzMom]

My daughter (18 months) had her check up today and she incredibly grew an inch and half in less than a month! The nurse measured her twice just to make sure that was correct lol. She had dropped down to the 25th percentile and she just jumped up to the 75th percentile for height again. She went gluten free the day of her scope (which was April 2nd) and she has been doing very well! 

 

Here's the thing-- 

Bloodwork was neg for celiac (although they did not do the DGP tests). Boderline IGA levels. 

No celiac damage in biopsies

Biopsies did show yeast infection in esophagus as well as eosinophils and inflammation in the stomach. 

Tested completely negative for all 25 food allergies

 

Her pediatrician does not think she has celiac and does not think there is a possibility that they missed it or she showed false negative. Her opinion is  "if she does better off of gluten then just keep her off of gluten". Which I understand, but I feel she has some significant issues in her GI system that should be tied to a cause. If it's not celiac, then WHAT would cause the stomach inflammation, yeast infection in esophagus, all of her digestive issues, slow in growth, etc.....

 

Would you push to test for celiac again? maybe when she's older?  Does it sound like it could be something else? 

 

 

[Brit1612]

Wow, that is great to hear that she is growing well.  Do you feel confident that the last height check was accurate as well?  Am I understanding right that the growth has come since going gluten free?  We were told by our immunologist, if our son's growth picks back up again after going gluten free, that would be enough for her to diagnose him (along with the other things, even with the negative test results).  Our stories are similar, I feel for all the worrying and wondering you are going through!  How have her GI symptoms been now that she has been gluten free for a while?

 

I think the hardest thing is getting accurate test results when they are so little especially since her IGA was a bit low (am I remembering correctly?).

 

Good luck to you, hope some of these other's have more helpful info for you (I could use it as well ).

[KenzMom]

She was measured by the pediatrician and at the GI office just before her scope and they were the same measurement...I am very picky and careful to make sure she is laying straight when they measure her. So I do feel that her measurements have been accurate and yes she has grown that much since going gluten free. 

 

GI symptoms are MUCH better!!

No more distended belly. Diarrhea only twice a week. She still gets gas and bloating every now and then but  it is manageable and she does not seem to be in pain (and she's not as smelly!). She's sleeping through the night, she's eating much less--she was a HUGE eater before going gluten free-- Every time I have wondered if she got cross contamination (because I am still learning) she has been bloated. Still on Prevacid for reflux so I can't tell if that's better or not. 

 

Yes, IGA was at the lowest end of the spectrum. The docs seem to only pay attention to the "facts" in front of them and not what the Mom is over here saying. 

[whitefairy30]

Hi.

Do you test the HLA ? 

[KenzMom]

Hi.

Do you test the HLA ? 

 

No- no HLA was tested. Forgive me, but I am not sure what HLA is or why it is tested? 

[Brit1612]

She was measured by the pediatrician and at the GI office just before her scope and they were the same measurement...I am very picky and careful to make sure she is laying straight when they measure her. So I do feel that her measurements have been accurate and yes she has grown that much since going gluten free. 

 

GI symptoms are MUCH better!!

No more distended belly. Diarrhea only twice a week. She still gets gas and bloating every now and then but  it is manageable and she does not seem to be in pain (and she's not as smelly!). She's sleeping through the night, she's eating much less--she was a HUGE eater before going gluten free-- Every time I have wondered if she got cross contamination (because I am still learning) she has been bloated. Still on Prevacid for reflux so I can't tell if that's better or not. 

 

Yes, IGA was at the lowest end of the spectrum. The docs seem to only pay attention to the "facts" in front of them and not what the Mom is over here saying. 

That's great to hear that her symptoms are doing better, and that she is growing.  It seems as though the diet is helping her; I guess the only question is "NCGS" or "celiac".  One thing I am not sure of, maybe someone else can answer this, is do kids have the growth issues with NCGS that they do with celiac?  Since growth has been an issue for us as well, I have been wondering if NCGS could cause that as well????? 

 

I think I have already asked you this but has she had the genetic testing done?  It doesn't tell you much but it could help convince you that you are going down the right path.

[KenzMom]

I looked up HLA-- i believe that is the genetic testing? We have not done that...does insurance cover genetic tests? 

[Brit1612]

At this point we have so many medical bills and can't even tell you how much of what they paid for.  But I know they atleast paid a portion of it because I wasn't asked to pay upfront or anything.  Our son came back positive for both of the main genes.

[whitefairy30]

Yes HLA it's the genetic test and if she comes out negative that roules out celiacs for ever, but is she's positive for dq2 or dq8 it's very likely she'll develop celiacs, so maybe go gluten free. 

[ravenwoodglass]

Yes HLA it's the genetic test and if she comes out negative that roules out celiacs for ever, but is she's positive for dq2 or dq8 it's very likely she'll develop celiacs, so maybe go gluten free. 

While rare there are diagnosed celiacs without one of those 2 genes. Having one of the 2 genes does not make it "very likely" she will develop celiac many people carry the genes but never develop celiac. 

[ravenwoodglass]

OP- it sounds like your little one is responding very well to the diet. It is great news that she is recovering so quickly. If it was my child I would keep her gluten free. If you do decide to test later you will have to challenge but with the preschool years being so important for growth and development I think you are wise to continue with the diet for at least now. 

[murphy203]

Great to hear that she is doing better!!