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When Should I Get My Girls Tested?

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I am in the process of getting diagnosed with celiac disease. I haven't heard from Doc and all blood panels where very high - so I have a very good chance that it is.

My girls are 5 & 3. When should I get them tested? Their doctor says they are probably to young unless they have symptoms. Maddi does get Headaches and egsima which I don't know is unrelated or not. El - seems fine. Should I wait on that? Also would my insurance cover it (generally?)

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Yes, they should be tested now. It's much better to find this early so as to better protect their adult health. All your first degree relatives should be tested.

Your insurance should cover it.

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We decided to test my 2 (almost 3) year old after my 4 year old was diagnosed. We're waiting on the results. I know there's a strong chance of it being a false negative but what if it was positive? And according to symptoms, it sounds like they're all over the place and even the doctors/dietician we met with say some say they have no symptoms but once they go gluten-free they realize there were symptoms.

If he does test neg, I plan on genetic testing to see if it's something we even need to worry about.

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The testing is a good base for future but remember that it is very hard for children that young to test positive by blood. So if they both test negative, don't take this as they don't or never will have celiac disease. They still can have it or suffer from it in the future so keep an eye on them.

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Thanks for the info. I had my 5 year old tested and found out that she was normal. Right now that is. I think their suggestion was to wait 3 years b/f the next test. I am thinking of waiting a little bit with my 3 year old. The GP suggested this. Of course if I start seeing something that could link them together then I will opt for testing immediately.

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After my 4 year old's diagnosis his pediatrician suggested no on testing my 2 year old. But we decided to go ahead. Guess what? Positive! I figured it's just some blood work. Nothing traumatic.

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I am trying to decide if I should get my just-turned-3 daughter tested. Her 5 year old sister and I were recently tested with Enterolab, and while we were negative for the main celiac genes, we were both making Anti-gliadin IgA and Anti-tissue Transglutaminase IgA. Part of our concern is if these results will affect their future insurability. Have you experienced any problems with this?

(We have noticed vast improvements in the 5 year old's behavior, and she wasn't badly behaved to begin with. She notices her tummy hurts her much less than it used to. She and I have been gluten free for about 2 weeks).

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I might be going against the flow here...

BUT this is what I've decided, for better or worse.

My son who is 4 took the genetic test and while his bloods were being taken they had to literally push the blood out and it was nasty. It ends up he has both genetic markers so it was a good thing he got tested. He is a different boy now he's gluten free, so much healthier. I don't regret taking him off gluten but I do so wish he didn't have to suffer the blood test but it was the only way to get the ped's to take any notice as they had previously decided they didn't want him to go through with the testing and have him symptomatic (not on my time).

But now my daughter who is just over 2 years has been taken off dairy and is getting worse, a lot worse. Yes, its a nasty business no doubt. But I am not sure I want her to go for her bloods just yet since they had so much trouble with Ravens her big bro. So at this stage she's just going to go gluten-free and when she's bigger we'll get her the full bloods (how can it hurt to wait? less torture at the moment). Going off gluten will show one way or another if she is or not anyway.

That was a few days ago .. we'd just been at the dr's about her and found out she's lost nearly 2 kilos in a month poor darling. I noticed at the pharmacy (the dr wants her to go on nasty flagyl even though there was no parasites in her faeces - that there's a new test to determine gluten sensitviity - its $30 a pop AUD, but it's worth it as its just a simple prick of the finger, a drop of blood and we've decided to go for that as an option! We'll gradually test all of the children, all but two are symptomatic (thats 3 of 5). I know it seems rediculous as it suppose to be one in 10 siblings or something isn't it?

Anyway I am rambling. I would rather wait til shes older than have a huge blood test at this stage... :D

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    Okay, thanks. Re: MTHFR - I don't really know yet... I only started reading about it yesterday and it is pretty overwhelming. But it does seem to be common advice that if you have a close relative with it you should be tested, and I guess having 2 copies of the "C" variant, as my sister has, is the "worst" variety of it.  It came to light for her when she was going through infertility and miscarriages.  They discovered that her homocysteine was high, which led to the MTHFR testing. So that is one thing I know I would then want to proceed to do, if I do have it - get my homocysteine tested. My dad died of early-onset Alzheimer's, and apparently there is a link between high homocysteine as well as the MTHFR mutation and Alzheimer's. It also seems like it would be worth knowing if I have it since it could be the cause of my lower levels of B12. And I guess maybe I would need to start taking methyl-folate? I mean, to answer your question, I am not entirely sure what I will do if I do have it.   Probably read a lot more about it... and take supplements like methyl-folate if I really think I need to.  Check my homocysteine & control that if I need to, hopefully to lower my risk of Alzeheimer's.  It seems like a frustrating area because there appear to be limited official medical websites that really even talk much about it (so far).  I have found one article on the NIH that focuses on the link with high homocysteine. I already eat a very healthy diet.  Whole grains, lots of fruit & veg, mostly organic.  I am a vegetarian except for very rare seafood. I avoid processed food and, above all, foods with added sugar...  To me, sugar is by far the worst culprit in the SAD.  I think RA has been ruled out by my 2 negative Rheumatoid Factor tests (one done several years ago, one just this year at my physical).  Also, the way this started in my elbows, and was really only there for years, is just... weird... and definitely doesn't really fit with arthritis.  And there is no swelling to speak of, just mild pain - sometimes aching, sometimes burning, sometimes sharp...  It may or may not fit with any systemic diagnosis versus a mechanical one, but nowadays I do also have pain in my hands, feet, and knees.  So then I think, well maybe it is/was something systemic, but it was worse in my elbows for some mechanical reason but now has progressed elsewhere.  I thought Crohn's was just digestive?  (Of course, many people think that of celiac.)  So I haven't really investigated that one much. My ANA was retested and is back down to "negative," so I think that pretty much rules out lupus.  I believe fibromyalgia is still on the table. Anyhow....  Your point is nonetheless taken.  I do want to rule out celiac and go from there.  At this point I'd sure love to find out it is something I could control through my diet!
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