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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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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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    • Yeah , i will look into getting tested - like you say there is no harm in it . What I found very interesting is the part where you say "Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflamed tissues pressing on nerves." - I also started to get chronic sciatic nerve pain on the right side over a similar time period and am wondering if its the same kind of thing. If I could solve both those things it would be life changing for me
    • Hi ,  i was thinking that an intolerance and allergy were about the same thing really but sorry if im wrong. I know celiac is an autoimmune disease but was thinking that is different again, more serious and was erring on the side of my possible issue not being that but more of the intolerance type. Clearly im just guessing though and dont know about this stuff , hence the posting for advice, The problem with trying to get tested is that in bolivia there are very limited tests and doctors are unreliable so you have to rely on yourself to certain degree. I have heard of a test here and was planning on looking into that but it made sense to try to get some opinions and advice online first so Im in a better position to understand if any tests here are actually reliable enough. I dont think there is an issue with travel parasites etc as I have already taken the medications thats would kill them like a course of albendazol and praziquantel and that was after a 2 week anti parasite cleanse. That did feel like it got rid of anything and the only issue I have been left with is this pain as described.
    • Karen's point about parasites etc is a good one. They can cause a lot of symptoms similar to celiac /ncgs as you probably know.  At 11 I had my appendix removed following pain in the lower right side of my torso. On waking up the surgeon told me that it was actually ok, when I asked what caused the pain I think they said it was probably glandular - they didn't know. Later I got pains in the stomach, usually a dull ache although I could get a fierce stabbing pain there too. When I went gluten free those pains stopped. as did my chronic sciatic backache which Ive subsequently realised was probably due to inflammed tissues pressing on nerves. I would ask the Bolivian doctors if they can get any celiac blood testing done. The standard ttg may not be beyond their labs. can't hurt to ask? Give your diet my guess is you've had a lot of gluten for a long time. If its an issue for you expect a bumpy ride when removing it.  Best of luck!  
    • You can supplement if you want to.  IF you are low on iron or vitamin D - then some vitamins might be helpful.   The treatment for Celiac disease is a strict gluten free diet.  Some people need to cut out lactose for a few months, too.  The villi that are damaged in Celiac are the part that helps you digest lactose.  So, until they are healed, it might help to skip milk , cream, etc.     http://www.cureceliacdisease.org/faq/are-there-vitamins-created-specifically-for-nutrient-deficiencies-in-celiac-patients-2/  
    • First - there is no such thing as a "gluten allergy".  Celiac is an autoimmune disease.  Just so you understand. It could be Celiac or a different gluten intolerance.  I am guessing you aren't going to get tested for Celiac disease.  IF it were me, I would be more concerned that maybe there is still some sort of infection or parasite from the places you have been.  I think I would try to get a good work-up for that first.
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