my 1 year old has celiac gene

[PersianCeliac]

Both my mom and aunt were diagnosed with celiac around 5 years ago and are following the gluten free diet strictly in spite of living in a country with very little gluten free options and almost no awareness.

i was assisting my mom with her diet and insisted she pays attention to cross contamination among other things. In fact, after learning of my aunt’s diagnosis, I took my mother for testing when I found it that it is genetic.

i got tested myself twice and was negative, my father did as well, and I had the gene test and I am negative for the main genes but carry DQ2.2. My two siblings refuse to get tested as they will not go gluten free even if they had celiac.

i have 2 boys, a 6 year old who is also negative for celiac gene, but my 1 year old carries DQ2.5in trans, he got DQ2.2 from me and DQ7 from his dad and that domination makes up DQ2.5.

seeing how difficult it is for my mom and aunt to deal with gluten free diet, I was depressed over my son’s results and started taking medication in fact given the level of stress and anxiety. I was probably overreacting but I am just so worried that he will get celiac and have many limitations with his diet. 
I just started having this feeling that he will surely get celiac since he has the gene and his grandmother has celiac.

anyone with children  or grandchildren that carry the gene but are negative for celiac ?

 

i plan to test him once he is 5 or earlier if he develops symptoms.

i am very worried and already treat him like a celiac. I am minimizing gluten in his diet, like once a week only. I don’t know what to do !

 

[cyclinglady]

Welcome!  

Relax!  While your children might have the potential to develop celiac disease, odds are they never will.  About 30% of the population carries the genes that COULD (not will) develop into celiac disease.  That is a lot of people.  Know one knows what triggers celiac disease.  It could be stress, a virus, whatever.  

I tend to compare developing celiac disease to an earthquake.  I live in California which has many earthquakes.  What can I do to prevent earthquakes?   Nothing.  It is an act of nature.  What I can do is to be prepared like having water or food stored, batteries, flashlights and a tent (in case my house is destroyed).  I do not waste time thinking about earthquakes.  I take comfort in the fact that I have done everything I can to survive a major earthquake.  You are doing everything right in regards to celiac disease.  You know there is some risk, so you are doing right.  You got screened, you have informed other family members and you will test your children.  Take comfort in your knowledge of celiac disease.  Your children will never suffer from years of undiagnosed celiac disease.  

I have have celiac disease.  My husband was gluten-free 12 years before my diagnosis.  While not formally diagnosed, we are pretty sure he has it.  Who else would avoid gluten for almost 20 years if they did not feel strongly that it impacted their health?  I have not done genetic testing.  Odds are our child carries the genes.  I have her periodically tested even though she is symptom free because some celiacs are asymptomatic.  She consumes gluten, but usually outside of the house.  Prior to testing, I make sure she consume gluten daily for about three months.  

Will she get celiac disease?  Maybe.  But we are prepared and we have the tools to insure she will healed as I have.  We also know there are more horrible things that can happen to her.  Celiacs can heal.  Just a simple dietary change.  How lucky is that?  

 

 

 

[squirmingitch]

Good advise from cyclinglady! 

Now relax, settle down & breathe a huge sigh. You're cool mom. You're armed with knowledge & can deal with it if you ever need to. You're a good mom. 

[NNowak]

First of all, you sound like a fantastic mom - please relax. I have Celiac and both of the genes. My two boys have the DQ8 gene, and the two girls have the DQ2 gene. My oldest child was diagnosed with Celiac at age 14 months due to immune deficiency issues. The immune system is not fully mature until after age 2, so I had him retested when he was in 6th grade. This didn’t require a gluten challenge because he would cheat at school and at friends houses. He was positive for Celiac the second time around, too. However, he outgrew his immune deficiency and clearly was in remission for Celiac at this time. Fast forward, he’s now 21 and thoroughly enjoying all the liquid grains he can get his hands on. ?‍♀️ 
 

My youngest child, a daughter with DQ2 gene, has NCGS. Although a gluten-free diet is inconvenient for her step mother, so she’s fully glutened 40% of the time. It’s likely she’s in the early stages of Celiac at 13 years of age, and has headaches with stomach pain and horrible skin as symptoms. My other daughter is 19 and has never had symptoms. My other son is 16 and has questionable symptoms. All of my children are allergic to dairy protein. 
 

My pediatrician has recommended that the children stay gluten-free through elementary school then be tested yearly thereafter. He’s a great doctor, and always asks me for my health update so he can be thorough with my children. 
 

I’ve had Celiac for 24 years and really didn’t have issues until a fall 3 years after that triggered an autoimmune response that I’m in the process of figuring out. It’s not horrible. There are far more gluten-free options now than 2 decades ago. Trust me, it’s not the end of the world if he develops Celiac - chances are that he won’t. 
 

I completely understand your anxiety over the potential diagnosis, but it’s unlikely to develop. You are doing the right thing by limiting his gluten now. Please relax. 
 

Welcome to the site, and feel free to ask questions as they arise. 

[kareng]

6 hours ago, NNowak said:

First of all, you sound like a fantastic mom - please relax. I have Celiac and both of the genes. My two boys have the DQ8 gene, and the two girls have the DQ2 gene. My oldest child was diagnosed with Celiac at age 14 months due to immune deficiency issues. The immune system is not fully mature until after age 2, so I had him retested when he was in 6th grade. This didn’t require a gluten challenge because he would cheat at school and at friends houses. He was positive for Celiac the second time around, too. However, he outgrew his immune deficiency and clearly was in remission for Celiac at this time. Fast forward, he’s now 21 and thoroughly enjoying all the liquid grains he can get his hands on. ?‍♀️ 
 

My youngest child, a daughter with DQ2 gene, has NCGS. Although a gluten-free diet is inconvenient for her step mother, so she’s fully glutened 40% of the time. It’s likely she’s in the early stages of Celiac at 13 years of age, and has headaches with stomach pain and horrible skin as symptoms. My other daughter is 19 and has never had symptoms. My other son is 16 and has questionable symptoms. All of my children are allergic to dairy protein. 
 

My pediatrician has recommended that the children stay gluten-free through elementary school then be tested yearly thereafter. He’s a great doctor, and always asks me for my health update so he can be thorough with my children. 
 

I’ve had Celiac for 24 years and really didn’t have issues until a fall 3 years after that triggered an autoimmune response that I’m in the process of figuring out. It’s not horrible. There are far more gluten-free options now than 2 decades ago. Trust me, it’s not the end of the world if he develops Celiac - chances are that he won’t. 
 

I completely understand your anxiety over the potential diagnosis, but it’s unlikely to develop. You are doing the right thing by limiting his gluten now. Please relax. 
 

Welcome to the site, and feel free to ask questions as they arise. 

If your son has Celiac - he still has Celiac. It doesn’t go away.  I actually thought you  Would know that.  
 

https://www.cureceliacdisease.org/faq/whats-the-difference-between-active-and-inactive-celiac-disease/

 

[kareng]

Back to the original poster- both of my boys ( in their 20’s ) have Celiac genes.  I have Celiac.  They have been tested a couple of times, and are negative.  They have no symptoms but are aware of what to look for - and not just the digestive ones.

it isn’t the worst disease a kid or adult could have.  It can be treated with food!  There is no medicines with side effects.  I don’t have to check my blood sugar twice a day and give myself shots, I don’t need surgery. If I eat gluten-free, it won’t shorten my life span, etc.  
 

 If your child does develop Celiac, your attitude and the way you handle it will go a long way to how he feels about it.  Relax.  There are so many other things to worry about with boys - “ you are going to jump your bike off WHAT?” “ stopping using your little brother for science experiments!”  “Yes, even a fireman had to take math”.    I could go on.......  save your energy for this stuff.  

[PersianCeliac]

21 hours ago, kareng said:

Back to the original poster- both of my boys ( in their 20’s ) have Celiac genes.  I have Celiac.  They have been tested a couple of times, and are negative.  They have no symptoms but are aware of what to look for - and not just the digestive ones.

it isn’t the worst disease a kid or adult could have.  It can be treated with food!  There is no medicines with side effects.  I don’t have to check my blood sugar twice a day and give myself shots, I don’t need surgery. If I eat gluten-free, it won’t shorten my life span, etc.  
 

 If your child does develop Celiac, your attitude and the way you handle it will go a long way to how he feels about it.  Relax.  There are so many other things to worry about with boys - “ you are going to jump your bike off WHAT?” “ stopping using your little brother for science experiments!”  “Yes, even a fireman had to take math”.    I could go on.......  save your energy for this stuff.  

Thank you so much for taking the time to respond. You are absolutely right, i need to start looking at the glass half full as opposed to half empty.

On 12/27/2019 at 11:13 PM, cyclinglady said:

Welcome!  

Relax!  While your children might have the potential to develop celiac disease, odds are they never will.  About 30% of the population carries the genes that COULD (not will) develop into celiac disease.  That is a lot of people.  Know one knows what triggers celiac disease.  It could be stress, a virus, whatever.  

I tend to compare developing celiac disease to an earthquake.  I live in California which has many earthquakes.  What can I do to prevent earthquakes?   Nothing.  It is an act of nature.  What I can do is to be prepared like having water or food stored, batteries, flashlights and a tent (in case my house is destroyed).  I do not waste time thinking about earthquakes.  I take comfort in the fact that I have done everything I can to survive a major earthquake.  You are doing everything right in regards to celiac disease.  You know there is some risk, so you are doing right.  You got screened, you have informed other family members and you will test your children.  Take comfort in your knowledge of celiac disease.  Your children will never suffer from years of undiagnosed celiac disease.  

I have have celiac disease.  My husband was gluten-free 12 years before my diagnosis.  While not formally diagnosed, we are pretty sure he has it.  Who else would avoid gluten for almost 20 years if they did not feel strongly that it impacted their health?  I have not done genetic testing.  Odds are our child carries the genes.  I have her periodically tested even though she is symptom free because some celiacs are asymptomatic.  She consumes gluten, but usually outside of the house.  Prior to testing, I make sure she consume gluten daily for about three months.  

Will she get celiac disease?  Maybe.  But we are prepared and we have the tools to insure she will healed as I have.  We also know there are more horrible things that can happen to her.  Celiacs can heal.  Just a simple dietary change.  How lucky is that?  

 

 

 

Thank you for this wonderful advise. It makes me feel better knowing about the experiences of others and looking at things from a different perspective. I appreciate it.

[PersianCeliac]

On 12/28/2019 at 1:58 AM, NNowak said:

First of all, you sound like a fantastic mom - please relax. I have Celiac and both of the genes. My two boys have the DQ8 gene, and the two girls have the DQ2 gene. My oldest child was diagnosed with Celiac at age 14 months due to immune deficiency issues. The immune system is not fully mature until after age 2, so I had him retested when he was in 6th grade. This didn’t require a gluten challenge because he would cheat at school and at friends houses. He was positive for Celiac the second time around, too. However, he outgrew his immune deficiency and clearly was in remission for Celiac at this time. Fast forward, he’s now 21 and thoroughly enjoying all the liquid grains he can get his hands on. ?‍♀️ 
 

My youngest child, a daughter with DQ2 gene, has NCGS. Although a gluten-free diet is inconvenient for her step mother, so she’s fully glutened 40% of the time. It’s likely she’s in the early stages of Celiac at 13 years of age, and has headaches with stomach pain and horrible skin as symptoms. My other daughter is 19 and has never had symptoms. My other son is 16 and has questionable symptoms. All of my children are allergic to dairy protein. 
 

My pediatrician has recommended that the children stay gluten-free through elementary school then be tested yearly thereafter. He’s a great doctor, and always asks me for my health update so he can be thorough with my children. 
 

I’ve had Celiac for 24 years and really didn’t have issues until a fall 3 years after that triggered an autoimmune response that I’m in the process of figuring out. It’s not horrible. There are far more gluten-free options now than 2 decades ago. Trust me, it’s not the end of the world if he develops Celiac - chances are that he won’t. 
 

I completely understand your anxiety over the potential diagnosis, but it’s unlikely to develop. You are doing the right thing by limiting his gluten now. Please relax. 
 

Welcome to the site, and feel free to ask questions as they arise. 

Thank you for your response. Were your other non-celiac children screened via blood test ?

[NNowak]

All of my children have been tested at least once for Celiac (blood).  Those that tested negative and have symptoms are screened by blood every other year (my youngest two).  I’m considering an EDG for my 13 year old daughter with NCGS to determine the true status of Celiac at this time. Her immunologist has recommended it due to her chronic stomach pain and headaches. 

[Awol cast iron stomach]

My children's Dr chose not to test them despite my request. We were told I needed an entirely gluten-free household for me to avoid cc ( which I told their Dr when I was undergoing my pending 6 months from my initial consult to my scopes. ) We knew it was likely  my testing required us to remove  gluten entirely after my testing finished. She said she wouldn't test them until my results were in. Once I  finished my testing and made another appointment for them she said she wouldn't test them since they had no symptoms . She continued to explain she couldn't test them since we went to a gluten-free home ( completely disregarding our previous conversation and my request). ??

Eventually when my daughter had some GI issues she finally sent my daughter to a GI Dr. The GI Dr  said she has no issues, but he did not do a full panel / scopes like my Dr had done.  She did not send my son at all. 

Once we got through that debacle, my husband requested our children now see the other two Dr's in the pediatric practice .(As their initial pediatrician at that practice did not seem to believe I am intolerant to gluten ?! ) 

We are a gluten-free, corn, and cow milk free household, we eat minimal processed foods, and don't eat out.

My children both live in a gluten-free household and to my knowledge maintain that away from home. Both children tell me they have no problems, but feel better not eating it. I do hope in time testing without undergoing a challenge is possible for both my children to ensure they do not have celiac. As for how the above story unfolded I do not feel confident that they are completely free of my genes.

 

Edited December 31, 2019 by Awol cast iron stomach
Autocorrect incorrect