Daughter with celiac- need test result help

[Gardenmamarama]

I need help. ? My 9 year old daughter was diagnosed with celiac one year ago. Her recent blood test shows iga 9 (normal is 0-3) and ema positive. The iga is down from 72 six weeks ago (normal 0-20) and over 100 one year ago. We have strictly adhered to the gluten free diet taking every measure I know to prevent cross contamination (no gluten in the house, complete overhaul in my kitchen, no eating out). I'm paranoid she's still getting gluten from somewhere and I need help to figure it out and correct it. Alternatively something else could be wrong giving us a positive (what could that be?). My daughter has slowed growth, constipation, and occasional itchy skin. She has not complained of gluten pains. She was probably glutened twice in the last year from cross contamination, one time 3 months ago and one time 6 months ago. Nutritionally she's perfect and last year at diagnosis she was anemic. If anyone can offer any input I would be so appreciative. 

[cyclinglady]

Welcome!  Your daughter seems to be healing!  No longer anemic, right?  So, you are doing a good job, Mom!  Has she had the DGP iga test for celiac?  That one seems to better measure dietary compliance since the TTG can be affected by other autoimmune disorders or it just takes forever....to come down in many.   I would definitely ask for that test.  Glutenings can cause auto-bodies to rise again.  Each person is different.  I was glutened at the beginning of July last year and six weeks later, my GI tested my antibodies and they were higher than when I was first diagnosed.  So, remember celiac disease is an autoimmune disorder that is triggered by gluten and causes the body to flare-up/react.  That flare-up can last for days, weeks or months (in my case).  Everyone is different.  You just want to continue to work on it going down and not up.  

So, ask for the DGP test.  

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The elevated iga result?  Mine is way high too.  My doctors attribute that to autoimmune issues (I have celiac disease and Hashimoto's Thyroidits). 

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Is her thyroid okay?  That can slow things down too.  

Hang in there!  

[Gardenmamarama]

Thanks so much for your reply and the encouragement! She has not had the dgp test. I will ask her doctor at the next appointment in two weeks. Her doctor is out of the country now for a family emergency so I can't talk to her before her appointment. Her thyroid is good. The whole thing has been tough - logistically dealing with the dietary change and how extremely careful we have to be. Emotionally - worrying about her health and her feelings about all of this. I'm happy her number came down so much. There's hope. I'm just praying there's not more wrong and trying to prevent any possible risk of cross contamination. It seems she's very sensitive. It's also tough she's a kid at school with gluten on every surface. 

[StephanieL]

You are doing well.  We didn't have a "normal" tTG for 6 years and were also very strict.  Kiddo was dx with hypothyroid as well and tTG fell a lot after getting on meds for that but still didn't normalize.  Finally cam down within the last 6 months (this after a trip to THE Celiac Dr. several years ago).  I wish we had done a DGP much earlier and I had pushed for that sooner.  I would start there and see what happens.  

 

Sounds like you're doing everything right though. Sometimes it just takes time. 

[Gardenmamarama]

Tell me if I'm going overboard- but I feel like she could be getting glutened from trace sources on surfaces. I'm a crazy person over it, like extreme germaphobe only it is gluten not germs. She's supposed to wash her hands and wipe the table before she eats. Being nine she's not always going to do that if I'm not there reminding her. Just an an example, we were at a birthday party recently. The kids ate pizza (my daughter ate her prepackaged gluten free pizza I brought). With their hands greasy from pizza they played a bounce a balloon game, where they all had to keep one balloon from hitting the floor, then sat down to cake. I sat in shock then made my daughter go wash her hands again before eating cake. Major crazy mom, but not really right? 

[cyclinglady]

You are not crazy!  She needs to learn to wash her hands before eating every single time and no fingers in her mouth!  

Do you have a 504 plan in place at school?

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Other parents have had this issue, so you can search the kids section of the forum.  

 

[StephanieL]

I don't think occasional "I didn't wash up" is going to keep her levels up like that.  We are very cautious here (and did have a 504 plan to keep him safe at school) and it still took a long time for the levels to drop.  If she's at a public school and you are concerned about her getting glutened there-you could go for a 504. Then you have the school make sure THEY are wiping down the eating space and so on. 

Another question, have all the labs been done at the same place?  That is something to look at too.

[Gardenmamarama]

Thanks so much for all off your feedback on this! I wanted to post an update after latest doctor appointment. 

The doctor was very happy to see my daughter's ttg came down to 9 from 72 in six weeks. Probably she was still getting gluten from somewhere, which we eliminated when I got "crazy" so part of this is learning for me- and we are avoiding eating out and continuing to be extremely careful. Over time it's becoming a new normal so doesn't feel as difficult. 

She's due for another blood test in August so I'm hoping her level goes down below 3. Wow what a party that would be! Just hoping we are on a good path. I will ask her doctor about the dgp. We've had different doctors and different labs so it's not always consistent. Her doctor did say based on other results that we can rule out inflammation from other autoimmune like crohns. Crohns was a concern because her grandmother has it. 

The main problem now is my daughter is continuing to have stomach pains and bloating once a week. She was doing so well and now not so well. Im still extremely careful about gluten. She takes miralax, lactaid and a probiotic so that should rule out constipation, lactose intolerance and bacterial overgrowth. I know it can take time but I feel I need to keep digging to find answers.

Her next blood work is in August so I'm planning on going to the celiac center in NYC with her results and all medical records to see if they can help. If it's trace gluten cross contamination, what more can I do to prevent that? Can they do more testing so I will know for sure if she's lactose intolerant or has bad gut bacteria? Can they do tests for more food intolerances? I need more guidance long term so I have a plan. I'm feeling overwhelmed that I cannot figure out the source of my daughters problems and I desperately want to know so I can make changes and she can be healthy. 

StephanieL where did you take your child when you went to see THE celiac doctor and how did they help provide answers? You can PM me. I'm finding out as much info as I can so I can tackle this problem. 

At school my daughter has a health plan which is similar to a 504 but it's an agreement between the parents and the school. I don't think it's taken as seriously as a 504, and I'm working on getting the 504. My daughter knows she has to wash hands and wipe down the table but a teacher needs to watch her. I also can't stand all the food in the classroom and I'll be researching info on how to manage that next! 

One thing I am trying new this week is the fodmap diet in the event sugar and carbs are the culprit. I'm giving it a try and crossing my fingers I find some answers. 

Thank you all for all of your feedback. Please keep any info coming as I'm desperately looking for answers!