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Should I Have My Children Tested?


Mgyoung77

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Mgyoung77 Apprentice

I found out about a month ago that I was celiac. Should I have my children tested for it?


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shadowicewolf Proficient

Yes, as the condition is genetic.

guest134 Apprentice

It is a genetic condition that is prevalent in first degree relatives so yes. I would recommend getting the Gene tests depending on their age. Although the Gene test would not diagnose Celiac it would be a good indicator of whether or not periodic blood tests are warranted.

glutenannie Newbie

I found out about a month ago that I was celiac. Should I have my children tested for it?

Depends on their age, and whether they have immune problems presenting. I would also famiarise with all related symptoms of G sensitivity so you can be aware of them occurring in your kids down the track.

Testing also depends on what test and whether of an invasive nature when there are no symptoms.

There are genetic markers for this condition and the likelihoood is strong that they may be gluten sensitive if not actually celiac prone. I found that it was far better and easier to adopt a general gluten free diet for entire family. (I.e. same cake/ cookies /gravy /noodles etc for everyone.) Also if you have already noticed immune problems then I would not hesitate to adopt this diet.

Also I advise to drop any ideas they may develop of being a 'victim of fate' or getting 'special treatment' as really it is no different to white skinned people having to take more care in the sun! You can say for e.g. "We-our family-always wears a hat in the sun or we get burnt, we- our family- dont eat G foods or we ...insert your words".

If problems have not already surfaced, I would let them "breakout" of gluten-free for social occasions where difficulty arises - birthday parties , school events etc, as it is frequency of consumption over time that leads to the chronic illnesses. Unless of course they have serious symptoms already in which case your doctor should have suggested..

They can test out (if they want) when they are old enough to make choices.

At 11 my oldest son ( still not tested and neither i for that matter) insisted on having a meat pie as school lunch treat once a month, "like the other kids" and always had a red rash around his mouth by the next day, which then took over a week or 2 to heal. He continued this pattern for most of that year. When he got to high school, the next year, he easily rationaiised that it was better to be rash free than eat G pastry!

The important thing is to understand that no-one "grows out" gluten sensitivity- so having gluten grains or avoiding them will not change the sensitivity anymore than we can change the color of your skin. It is the signs & symptoms that may change during the lifetime, and they will worsen if the cause is ignored. Which is why being generally gluten-free is the best you can do for your children now. Please read "Dangerous Grains" for more.

Lisa Mentor

I don't see a reason to test them unless they show symptoms. A gene test just shows a low probability/association. <wouldn't waste my time and money at this time. :)

I don't know how old your children are, but keep a keen watch. No need to be alarmed until there is an issue. :)

AND WELCOME!

kareng Grand Master

Lets get some actual medical advice:

These are from the University of Chicago Celiac Center:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Mayo:

Open Original Shared Link

My boys were teens when I was diagnosed. I had them blood tested and they were negative. If they start having any problems- GI, migraines, etc they will be re- tested. They know to look out for it. No did not do a gene test. 30% approximately of the US has the genes that are routinely tested and most don't have Celiac. I didn't want anything that could be used against them in the future like a pre- existing condition or if they wanted to join the military.

Mgyoung77 Apprentice

Thank so much for your replies. My kids do not show definate symptoms. However, they all seem to get sick very easy. They pick up anything that's going around and often have it longer than normal. Not sure if that could be a symptom. My kids are 10, 8, 5, and 2. Right now my family still eats gluten for lunch and dinner or when we are out. However for dinner, everyone eats gluten-free with me. I don't cook separate meals. I also read in the articles above that they may not show symptoms. My 10 year old is rather short for her age. But I'm only 5'4" and my husband is 5'8". I have a sister that is only 5', so initially, her short height has never alarmed me. Now that I've read celiac can affect growth in children it makes me wonder. I also wonder how long it has been affecting me. The stomache issues started a year ago. However, looking back, I think it's been causing migraines and my tiring easily for a lot longer. Without the stomach issues I would not have gotten a diagnosis. If they have celiac, I want to find out before they get as "sick" as I was. Thanks again for the advice and thank you for letting me ramble. It's nice to talk to people that understand.


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kerid Newbie

i would get my children tested if i were you. i'm very sensitive to gluten, and antibodies were found in my husband's and my saliva, so i got the gene and full celiac panel done on my children. i would never wait for symptoms first, as gluten can be wrecking havoc inside, and you would never know it. i have a friend who was completely fine, and was diagnosed with osteoporosis at only 35yo, and that's when they found out that she has an intolerance to gluten. afterward, she found out that her uncle had celiac disease, and her grandmother died of a "wasting" disease years ago. sure your children's tests can come out negative, but at least you tried! (imo...) (and even if they come out negative, it could be false or it could be true, and they could develop it down the road, so you still need to keep an eye out.) i got mixed results on blood and saliva for my children, so we are doing stool testing next (which i hear is vey good!)

good luck!

nvsmom Community Regular

I would get them tested too, and I would go one step further and make them gluten-free too. I had my boys tested and they came back negative but 2 of 3 of them showed some possible symptoms of gluten intolerance (emotions near the surface, short stature, tired, always hungry, stomach aches, and too frequent bowel habits). I slowly made them gluten-free and their symptoms are disappearing! My oldest is much calmer, concentrates better on his work and doesn't complain as much and my youngest doesn't need the toilet 5-8 times a day anymore.

If they do continue to eat gluten, you might consider getting them tested every couple of years so if it develops in childhood, you can catch it early.

Lisa Mentor

Mgyoung77... Should you decide to have your children tested, this is the panel that should be ordered by your doctor:

The following are the celiac specific blood tests:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

This blood panel is the only recognised, non-evasive method to diagnose for Celiac Disease, at this time. An endoscopy exam can also be diagnostic. A positive dietary response and a gene study, will/can all be supportive.

Cara in Boston Enthusiast

Since a huge number of people have celiac but have zero symptoms, it does not make sense to wait for symptoms. Especially for a simple blood test. Our son's doctor said all first degree relatives should be tested (regardless of symptoms) every two years . . . or sooner if symptoms develop. Second degree relatives should be tested if they have any symptoms or if they have been diagnosed with another autoimmune disorder.

pain*in*my*gut Apprentice

Since a huge number of people have celiac but have zero symptoms, it does not make sense to wait for symptoms. Especially for a simple blood test. Our son's doctor said all first degree relatives should be tested (regardless of symptoms) every two years . . . or sooner if symptoms develop. Second degree relatives should be tested if they have any symptoms or if they have been diagnosed with another autoimmune disorder.

^^^^This. Why wait for symptoms? By that time the damage has been done. Not to mention that kids sometimes have different manifestations of Celiac (cognitive issues, neurological, etc.) It's just a blood test. Get the genetic test first, because if they are negative, then you don't have to worry about it. If they have the genes, get them tested for Celiac.

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      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
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