4 year old Pre-Diagnosis (waiting for biopsy)

[Malim]

Hello,

We just had our GI appointment today after blood work stated: "serological evidence for celiac disease is present" My daughter has a variety of symptoms that indicate a gluten sensitivity and we have family history of gluten sensitivity (cousins on both sides). I would like to see if anyone can comment on her test results with their thoughts. 

At the appointment today the GI said based on symptoms + blood work, she recommends endoscopy to confirm / rule out Celiac Disease. However, due to COVID19 they are not scheduling endoscopies until further notice. I am in the United States, and we really don't know how long it'll be until we can get this scheduled.

I am posting blood tests with results below, and would love insight. Based on your experiences, and the blood work below, would my daughter essentially need to be off gluten even if endoscopy comes back normal? I understand that TTG of 9 is a weak positive, however it does mean antibodies were detected. Is her other blood work normal? Does she need more blood work?  If we have to wait 6+ months for a endoscopy because of COVID19 I feel bad continuing to give her gluten when it could be really hurting her. Please let me know your thoughts.

 

Tissue Transglutaminase AB, IgA: 9                      (<4, doctor stated her results are weak positive)

Immunoglobulin A: 66  mg/dL                               (22-140 mg/dL)

Gliadin AB, IgG: 14                                                (<20)

Endomysial AB Titer: 1:5                                       (<1:5)

Endomysial IGA Antibody (rflx ttr): Negative         (Negative) 

**We were fortunate enough to even get an appointment at this time with COVID19, and I understand the delay in endoscopy scheduling so that medical professionals can help those who need it more at this time**

Thank you for reading this! 

Edited March 18, 2020 by Malim

[Fenrir]

Well, on children more and more they are recommending not doing EGDs anyway. 

It could be upwards of year in some cases for people to get in for a EGD after all this is over. I would ask the GI specialist if you can just go on a presumptive Celiac DX and go gluten-free to start feeling better. 

[Scott Adams]

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[Malim]

I think I will see if we can get on the schedule within the month... if not I will ask for the two stage diagnosis method. Her numbers were not super high which I can see why the GI wants endoscopy but I really don't want be feeding her gluten if its hurting her body. 

Perhaps I am more worried about the diagnosis itself vs not getting it? Is it difficult to navigate a child with possible severe gluten issues if I cannot get a proper diagnosis for a 504 plan for school?  Should I be even worried about this?  The timing of everything just plain stinks. Having a presumptive diagnosis could seem helpful if they support that, I will have to call to find out. 

 

Thank you for your feedback so far.

Edited March 18, 2020 by Malim