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Looks Like My Daughter Inherited My Genes. :(

Christine0125

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Christine0125 Contributor
Christine0125
Posted

I was diagnosed earlier this year and was waiting to get my kids screened until their next well child visit. My daughter started having some tummy issues that didn't resolve in the normal time if it had been a virus so I took her in and request the celiac panel. I don't have the results in hand but her iga was normal but TTG slighly elevated (normal is less than 4 and hers was 6). She has been gluten-light since my diagnosis as our main meals are always gluten-free to avoid cc so my guess is the low number is due to that. We've now been referred to a pediatric GI. We were able to get an appt at Univ of MD next Monday (yay!). I'm fully expecting a celiac diagnosis and I've been trying to get her mentally prepared for that. On to my question... do you think they will push for an endoscopy? A positive ttg is a postive, right? My gut says the positive ttg plus family history will be enough and I really don't want to put her through the procedure. I know it's a standard low-risk procedure. I had one and it wasn't bad just hate to put a child through that if it's not absolutely necessary and especially since she's been gluten light for about 10 months. Would love to hear some opinions...

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shadowicewolf Proficient
shadowicewolf
Posted

I have a positive IGA TTG and both genes, but a negative biopsy and the rest of the panel was negative. As far as i'm concerned, I have it.

There is something to consider though. She will be starting school soon, yes? To get accomodations, you have to have a positive dx. If so, she would be able to get a 504 plan and the school would have to accomodate her.

Christine0125 Contributor
Christine0125
Posted
  • Author

I have a positive IGA TTG and both genes, but a negative biopsy and the rest of the panel was negative. As far as i'm concerned, I have it.

There is something to consider though. She will be starting school soon, yes? To get accomodations, you have to have a positive dx. If so, she would be able to get a 504 plan and the school would have to accomodate her.

She's in 3rd grade (turning 9 tomorrow). What accomodations would she need exactly?

shadowicewolf Proficient
shadowicewolf
Posted

Lunch room accomodations, clean ups and what have yous. If they are doing a project (with plaster, playdough or whathaveyou item with wheat) she would need a substitute. If she is sick because of celiac then she'll be given time to make up the work without issue.

Celiac does fall under the ADA law (americans with disabilities act). Your best bet would be to call the school and ask to speak to the person who is in charge of the 504 plans. Tell them whats going on and see if they could give you some ideas of what they could do for her.

When i was that age, i was on a 504 plan for different things (see sig). They had a meeting with the teachers who would be teaching me and told them what i needed to have (ex. i had to sit in front row).

hope this helps some :) I know some things about such things.

1974girl Enthusiast
1974girl
Posted

I am going to be in the minority here I know but I'd retest her in 6 months. Did they do the Ema test? If that was positive, ignore me and go gluten-free now. It is 98-99% accurate. My daughter was tested when her sister had celiac. She had a slightly elevated TTg and neg on ema. 2 GI doctors told metro retest in 6 months. We did and she was normal. We will continue to retest her but I wasn't willing to put her on gluten-free for life for a weak positive on only one thing (all other panels were normal). If she still shows high in 6 months, go gluten-free.

Christine0125 Contributor
Christine0125
Posted
  • Author

Thanks for everyone's replies. An update: My daughter had her appt yesterday. All evidence points to celiac: ttg slightly elevated, slow growth (3rd percentile), recent tummy issues coupled with exhaustion and big mood swings. We have decided to move forward with an endoscopy following a long talk with the doctor. Bottom line, she needs it for an actual diagnosis and to get a baseline of the damage. She said this would be helpful if for any reason she doesn't improve on the gluten-free diet and needs to be rescoped in the future. It will also qualify her for various treatments that would be available in the future. She was seen by a doctor who does rotations in the Celiac Center at UMMS but the diagnosis would make her a patient at the Center for Celiac Disease Research. I want her to have access to the experts in the field so we're keeping her on gluten (surprisingly much to her dismay right now which I think is a sure sign she knows that's the culprit in what's making her sick) until the endoscopy can be done. I also called the pediatrician to get bloodwork ordered for my son to be tested before we convert to a fully gluten-free kitchen at home.

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