Advise from mothers with celiac

[PersianCeliac]

Hello Ladies,

 

I am a mother of 2 boys, the youngest is 1 year and 4 months old and has the DQ2. My mother and aunt both have been officially diagnosed with celiac a couple of years ago and are doing well on the GFD.

i Have been tested Twice now and negative so far, and planning to get tested every other year.

i am planning to have my son tested as he gets older. For now, to minimize his risk I have him on an almost gluten free diet with very very minimal gluten just like every other week once or twice. I read in a recent article that high gluten intake in kids with celiac gene increases their risk so I am trying to minimize it.

 

i really don’t know if I am doing the right thing here. I would like to hear from other moms who have been officially diagnosed with celiac and have kids who are so far negative for celiac but carry the gene, any advise ladies ? What are you doing with your kids gluten free ? No change in diet or less gluten ?

i would appreciate your Input as I am really stressed and feel somehow guilty as a mom although I’m not sure why !!

[cyclinglady]

This is a tough topic and there are no easy answers.  I think you just have to use your good judgement for you and your children.  

When my daughter was born, I nursed her for a very long time.  I followed my allergist’s advice about introducing foods, starting with veggies at 8 or 9 months (the time she seemed to want food).  I added meats, fruit and finally dairy.  I gave her grains/legumes, but avoided gluten and eggs for a few months into her second year of life.  No nuts until she was two.  This was based on our allergies and intolerances.  Her PED was not happy but he later told me that she was one of his healthiest patients.  I just tried to avoid the Standard American Diet for as long as possible (until she went to preschool).  

She was tested for  celiac disease when I was diagnosed and then again before going off to university.  Negative on the complete panel.  No genetic testing because I do not want that on her record.  I do not want anything to impact her ability to get health insurance (if things change) or life insurance.  In the past, I was denied health insurance, even though I could afford it.  

She knows if she develops symptoms to get re-tested.  

While in our house she is gluten free (before testing, I made sure she was consuming gluten daily for three months).  She likes it.  

Here are some current guidelines, but I bet you already have researched this because I get the sense that you are on top of things: ?

https://www.beyondceliac.org/research-news/new-guidelines-for-feeding-infants-at-risk-for-celiac-disease/

[Awol cast iron stomach]

My cousin, myself, and a recent acquaintance are all gluten-free. My cousin's children last I spoke with her are all negative and currently eat gluten. Last I spoke they are a shared household. 

After my testing my Dr. told us that I would need a completely gluten-free household. I had gone gluten-free and did the shared household for 4 years prior to diagnosis. I did the challenge then removed all Gluten completely from the home. My kids eat gluten-free , but are not required to be outside the home. They choose to eat gluten-free even outside the home. They go to the yogurt place and select gluten free items, but are not strict like me about cc. My daughter occasionally goes out for gluten-free vegan with Dad on her b-day. I don't as her restaurants are shared /cc.

Edit : I should be more clear sorry. My kids ate gluten prior to 2016. After 2016 they went gluten-free in and outside house. Their Dr at The time said they were asymptomatic and won't test them unless they become symptomatic. The other Dr's know they are gluten-free and are fine with it due to my neuropathy  and cc Issues etc. They should be tested it they become symptomatic. We didn't do gene testing as cycling lady explained insurance standpoint etc. 

I have a recent acquaintance, of his two kids one has the gene and one does not. The way he educated me about the issue is the child with the gene, at some point the gene will turn on and his child will become intolerant/celiac. As of now the child is not. The other one will not ever become intolerant based on not having the gene. He told me this is based on current research. 

Edit: my understanding the child with the gene occasionally eats gluten, but is tested yearly or if symptomatic.

 

Edited March 1, 2020 by Awol cast iron stomach
Forgot statement

[NNowak]

I was diagnosed at age 24 (1995), prior to children.  I have both genes (HLA-DQ2 and HLA-DQ8).  My first child was born in 1998 and 5 months later diagnosed with immune deficiency. At 14 months a celiac diagnosis was obtained with a genetic profile of HLA-DQ8. I had three miscarriages and 3 more live births. My 2 boys both have the DQ8 gene and my 2 girls have the DQ2 gene. 
 

The pediatrician has recommended the children remain on a gluten-free diet through elementary school. He retested 3 of the 4 children once they regularly consumed gluten in middle school, only if they had symptoms. My youngest daughter has been diagnosed with NCGS and my youngest son is completely negative. I expect at some point the younger two children will develop celiac simply due to the symptoms I’m observing. I have 2 sisters with celiac and 1 with NCGS. Hashimoto’s, pernicious anemia and hemochromatosis are are common ailments in my family. 

As a mom, do what you feel is right. I’d advise that you stay on top of your health and test your children if you, or they, have any developments. The genetic testing is rather benign and only gives you a clearer picture of what you’re dealing with. 
 

Feel free to ask questions if I haven’t been clear. 

[PersianCeliac]

On 3/2/2020 at 1:47 AM, NNowak said:

I was diagnosed at age 24 (1995), prior to children.  I have both genes (HLA-DQ2 and HLA-DQ8).  My first child was born in 1998 and 5 months later diagnosed with immune deficiency. At 14 months a celiac diagnosis was obtained with a genetic profile of HLA-DQ8. I had three miscarriages and 3 more live births. My 2 boys both have the DQ8 gene and my 2 girls have the DQ2 gene. 
 

The pediatrician has recommended the children remain on a gluten-free diet through elementary school. He retested 3 of the 4 children once they regularly consumed gluten in middle school, only if they had symptoms. My youngest daughter has been diagnosed with NCGS and my youngest son is completely negative. I expect at some point the younger two children will develop celiac simply due to the symptoms I’m observing. I have 2 sisters with celiac and 1 with NCGS. Hashimoto’s, pernicious anemia and hemochromatosis are are common ailments in my family. 

As a mom, do what you feel is right. I’d advise that you stay on top of your health and test your children if you, or they, have any developments. The genetic testing is rather benign and only gives you a clearer picture of what you’re dealing with. 
 

Feel free to ask questions if I haven’t been clear. 

Thank you for responding.

did you have your miscarriages after or before celiac diagnosis ?

my mother had 2 live births and 3 miscarriages before her celiac diagnosis !

[NNowak]

4 hours ago, PersianCeliac said:

Thank you for responding.

did you have your miscarriages after or before celiac diagnosis ?

my mother had 2 live births and 3 miscarriages before her celiac diagnosis !

I was diagnosed at 24, had a period of infertility before my first child was conceived, then 3 miscarriages and 3 more live births. Looking back, I had undiagnosed MCAS and B12/Folate deficiencies. At age 48 I’m finally with a specialist that looks at everything rather than segmenting my symptoms and pushing me off on another doctor. 
 

Hope this answers your question.