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Can both kids have celiac and neither parent be positive?

Barcino
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Barcino Rookie
Barcino
Posted

2 weeks ago my son was diagnosed with celiac disease. Today we got confirmation my daughter was also positive by blood with antibodies through the roof like my son. Neither my husband nor I were positive via bloodwork (complete celiac panel) - how can this be? I have one cousin with celiac on my side of the family and we believe my husband's family has the gene because my nephew had it show up in a genetic workup. 

I am starting to think my husband and I might need endoscopies to truly rule it out? My husband is type 1. 

Anybody in our situation?  both kids positive but negative parents? 

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knitty kitty Grand Master
knitty kitty
Posted

@Barcino, 

Anemia and Diabetes (both types) can cause false negatives on blood tests for CeD.  Yes, endoscopies would be a good idea to check for Celiac damage and to get a baseline if symptoms arise in future.

There's lots of Celiac symptoms that people can dismiss or attribute to other things.  We do have members who weren't diagnosed until seventy or eighty years old.  Active Celiac can be triggered any time.  Dr. Derrick Lonsdale and others believe Thiamine deficiency can precipitate Celiac and other diseases.  The nephew you mentioned has autism.  High dose Thiamine has been shown to be beneficial.  

 

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps!

Barcino Rookie
Barcino
Posted
  • Author

yes, he has autism. My nieces too and at least one other and both parents do gluten free because they feel sick on gluten. I will send that their way! Thank you! 

Very interesting to know type 1 could cause a false negative!  thank you! 

  • 5 weeks later...
NNowak Collaborator
NNowak
Posted

Neither of my parents had celiac, but 3 of 4 daughters have it as well as the majority of grandchildren. I have both genes and know my mother only carries one gene. If my 4 children, 2 have celiac and 1 has a sensitivity to gluten. All of my children have only one of the genes. Genes are truly fascinating in this instance. 

Barcino Rookie
Barcino
Posted
  • Author
1 hour ago, NNowak said:

Neither of my parents had celiac, but 3 of 4 daughters have it as well as the majority of grandchildren. I have both genes and know my mother only carries one gene. If my 4 children, 2 have celiac and 1 has a sensitivity to gluten. All of my children have only one of the genes. Genes are truly fascinating in this instance. 

Thanks for sharing. The shock has subsided a bit and we are so thankful to know so we can get them back to health. 

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