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I Have Celiac... Should I Test My Kids?


sydneysmommy

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sydneysmommy Apprentice

I have known for 8 years that I have Celiac Disease. It has been very difficult adjusting to this lifestyle (as i call it) after getting the diagnosis as an adult (who looooooooooved italian food!).

Now that I am a mom (I have a 3yo girl and another girl due June 2), and know that Celiac is genetic, I do want to test my children.

My 3yo daughter hasnt seemed to have any symptoms or gut issues at all... but for my own peace of mind, I'd like to know. So I asked her pediatrician, and she said NOT to test her and NOT to put her on a gluten free diet. Her reasoning is that the disease may NEVER surface (if she does have it) and that she is more likely to have it surface now if we start doing gluten free etc.

I have never heard of this!

I would ASSUME that if you have Celiac, you want your family tested for this, am I right?

And since her pediatrician doesnt seem on board... who should I consult with about getting my 3yo tested ... and then later, my newborn?

Thanks in advance!


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Lisa Mentor

I have heard that first degree relatives have a 20% change of Celiac Disease. If that's the case, it's a very good likelihood that your children may never develop Celiac.

Testing for children under the age of five is highly unreliable and your child is not symptomatic. I would be aware of the possibilty and watch for symtoms.

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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