When To Retest

[jlbesel]

I was diagnosed with Celiac Disease a little over a year ago (after 38 years of consistently being overlooked because my symptoms weren’t classic abdominal pain and bloat but instead presented as joint pain and chronic fatigue). The development of anemia was when my doctors finally started to believe me that I was ill. Turns out I have the HLA-DQ2 and HLA-DQ8 genetic mutations, was positive for the Celiac inflammation panel, and the diagnosis was confirmed with two endoscopes (first showed moderate Celiac, second showed mild Celiac with likelihood of cross-contamination exposure). I have two children. Both tested positive for HLA- DQ2 and HLA-DQ8 mutations but neither have active Celiac. I was told by their pediatrician that they could continue to eat gluten but they should be retested every two years to make sure they didn’t have any inflammatory markers (as they can still develop Celiac Disease at any time in their lives). We recently moved across the country. Their new pediatrician says they should not eat gluten at all and that we don’t need to retest them at all. I don’t know who is right and I’d like to hear from doctors who specialize in Celiac Disease as to the best action plan for my carrier children. I don’t want my kids to develop and suffer with symptoms for any length of time before being treated and would prefer to take a preventive approach. Thank you so much!

[cyclinglady]

I am not a doctor, but I do have a kid.  I never had gene testing either, but I am biopsy-confirmed.  My hubby went gluten free 18 years ago per the poor advice of two medical doctors.  He wishes he had a firm diagnosis (better support from family, friends and medical) but the fact is a gluten challenge is out of the question.  Frankly, we like paying our bills and eating!  We know that autoimmune runs strong in both our families and after 18 years we know that gluten makes him sick.  

Our kid, who is asymptomatic, was tested twice.  Full celiac panels.  Insurance never balked.  I just had her retested just before she headed off to college this fall because it is hard to live gluten-free in a dorm.  Few campus’ can actually keep a celiac safe.   Our house is gluten free, but each time she was tested, I made her do a gluten challenge for three months (ate gluten at school usually or on the front porch!). The current recommendation is testing every two to three years or sooner if symptoms occur.  

I think your current PED is wrong.  Just because you carry the genes, does not mean you will develop celiac disease.  Some 30% or more of the population carries the genes.  Do they all need to go gluten free?  No.  Think how hard it is to be gluten free.  If there is no known medical need, why do it?  Socially is is very hard.  You know that.  

https://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_0313_v5.pdf

Do I worry about my kid?  You bet.  But I think research and awareness is the key to keeping her safe.  Honestly, I never had her gene tested because I do not want her to have to disclose that to a life insurance company.  If she does develop it, then chances are she will heal fast.  Believe me, she is aware of our strong family history of autoimmune disease.  I tell her, “Be aware of the risks, but go live your life.”   Like you, I do not want my kid to go through years of suffering with an undiagnosed illness.  

A gluten challenge is awful based on all member reports.   Six to 12 weeks of misery.  For whatever reason, consuming gluten once you have been gluten free and if you have celiac disease or NCGS, is pure misery.  It is why I did challenges during the summer for my kid.  I never took my kid off gluten, it was that she was just gluten light.  

If your kids are gluten free without supporting documentation, (the next PED might rescind the diagnosis), your kids might have a hard time getting school accommodations, food in jail or a hospital.    Some doctors will give a celiac disease diagnosis based on an elevated blood test result and improved symptoms based on the gluten-free diet (no endoscopy).  But those kids are sick and you report that they are healthy.  Again, Gene testing is used NOT to diagnose celiac disease but to rule it out.  

 I am sure others have valuable input.  Just do the research and make an informed decision.  Your kids are lucky to have a caring mom who is willing to go the extra mile!  

Edited October 7, 2019 by cyclinglady