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Just Because I Have It Do They?

mommaofthree

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mommaofthree Newbie
mommaofthree
Posted

I was just finally dx with Celiac about 8 days ago...Just in time for the Holidays! However I am thankful to have a reason for all my symptoms. I have three young children, should I go and have them tested even though they show no sighns of food allergies or problems? I never showed any problems until about 6 months ago and it was for irritable bowl syndrome, which is actually Celiac. They believe I have had this for more than 5 years because of the damage. Does anyone have any suggestions? I do not want to just change the way that my kids eat to see or put them through a very uncomfortable procedure for no real reason.

HELP!!

mommaofthree

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Mother of Jibril Enthusiast
Mother of Jibril
Posted

Since celiac disease is genetic, having a mother with celiac is a major risk factor. That being said... your kids might be perfectly healthy and never develop celiac disease (or any other autoimmune disorder). I have two kids, a three-year-old daughter and a nine-month-old son. My son definitely inherited some of my problems... he's very sensitive to casein and corn. I'm keeping him off gluten until he can decide for himself if he wants to give it a try. My daughter did have eczema as a baby and has an allergy to pumpkin seeds, but otherwise she's in great health. For the time being, she's on a gluten-lite diet. I'm planning to do a genetic test for both of them in the near future... it's just a cheek swab (easy and completely painless).

Assuming you do a lot of the cooking, you might want to keep your whole family on a gluten-free or gluten-lite diet. My daughter doesn't mind the gluten-free and CF substitutes. She actually likes soy milk better than cow's milk! A few days ago we had gluten-free chocolate cake and she thought it was great :P Baking with wheat flour is especially hazardous for celiacs... it gets into the air and settles all over the place in your kitchen.

happygirl Collaborator
happygirl
Posted

All first degree relatives (parents, siblings, children) should be screened for Celiac, regardless of presence/absence of symptoms.

If negative, it is important to monitor them and periodically have the bloodwork re-run. Also, their medical professionals should be made aware that a first degree relative has biopsy diagnosed Celiac, which increases their risk of developing Celiac at some point in their lifetime.

Silent or asymptomatic Celiac is more common than Celiac with symptoms, so it is important to know. Its better to know and take action than to not know - it has the potential to prevent a lifetime of health problems.

mommaofthree Newbie
mommaofthree
Posted
  • Author

Thank you for all your insights. I was not planning on making my family eat my food except for meals together, but maybe this would be a good thing. I was not aware of the mouth swab, my GI doc said she would have to scope them and take biopsy's like she did for me. I didn't want to put them through that. I will need to do more research on this and do gluten free at home for everyone until other wise indicated.

sbj Rookie
sbj
Posted

Your children are at an elevated risk for celiac disease and they should be tested. The celiac blood panel is virtually painless (Accuracy depends on age and other factors but the panel is definitely the way to start.) While the normal risk of having celiac disease is, I believe, about 1 in 133, your first degree relatives have a chance of about 1 in 22.

I do not want to just change the way that my kids eat to see or put them through a very uncomfortable procedure for no real reason.

You should NOT change their diet until you have completed testing for celiac disease. Not to worry about an endoscopy or other uncomfortable procedure (?) - first things first - get the celiac blood panel. If one or both tests positive you can then speak to a gastroenterologist about the endoscopic procedure. Genetic testing won't tell you much; having the genes just means you have the capability - it doesn't tell you if you actually have a problem.

These questions are best directed to your doctor - hopefully a gastroenterologist.

I'm relatively new to the diet and so far I do not find it too difficult. You've got to become an obsessive label reader, you won't eat out very often, you're gonna be cooking many meals and cleaning a lot of dishes, but you'll do just fine. Concentrate on everything that you can eat and don't look back. Best of luck.

cruelshoes Enthusiast
cruelshoes
Posted

A cheek swab is only a test for the genetics. It is not a substitute for the full celiac bloodwork panel. 30

cruelshoes Enthusiast
cruelshoes
Posted

I remembered the name of the numbing cream - it's EMLA. Here is a link to the manufacturer's website.

Open Original Shared Link

I also wanted to add - if you do end up getting your kids tested, and their results are negative, it is not a negative for life. In young children (some say under 2, some say under 6) the tests are less likely to be positive. Several of the tests in the celiac panel are IgA tests, and children produce less IgA than adults do. Since you are a diagnosed celiac, your first degree relatives need to be tested on a regular basis (our GI says every 2 years), or more often if they begin to present symptoms.

Hope this helps.

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Marie2375 Newbie
Marie2375
Posted

They should have the Celiac blood panel done. If it is neg, they should be tested every three to five years. If they do start showing symptoms, get them tested right away. I "needed" to know if my kids have the gene or not, so we have had the Celiac PLUS test (through Prometheus) done on two of them. The third will get his in January. Our insurance is covering most of the cost because we had the blood draw done at our GI's office. One son did NOT have the gene. The other has the gene and elevated antibodies. His endoscopy is scheduled for tomorrow.

If the blood panel is negative, they won't do the endoscopy unless they have some other reason to do one.

  • 3 weeks later...
mommaofthree Newbie
mommaofthree
Posted
  • Author

So I went and had the blood pannel done on 3 of my kids. However I can not talk to the doc until after Christmas. Can anyone tell me what IGa level my kids should be in for normal range and what is abnormal? I have the numbers but nothing to compare it to.

Thanks

happygirl Collaborator
happygirl
Posted

It will depend on the test (there are multiple IgA based tests) and the lab that ran them, to correctly interpret them. Without the reference range and name of test, it is too hard to guess.

dandelionmom Enthusiast
dandelionmom
Posted

I'd have them do the blood test. It wasn't too bad and I just bought the kiddos a nice bribe to get them through it. :)

Oops, I should have read the rest of the responses before replying!

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    • Jane02
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