Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
0
L13

When Should I Get My Girls Tested?

Rate this topic

Recommended Posts

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?)

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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).

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Top Posters +

  • Upcoming Events

    • February 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,551
    • Most Online
      4,125

    Newest Member
    celiac85364
    Joined
  • Forum Statistics

    • Total Topics
      111,822
    • Total Posts
      955,922
  • Who's Online (See full list)

  • Forum Discussions

    Report on Gluten Free Foods & Beverages Market (2019) gives complete outlook of ... non-celiac patients with more number of new product introductions in ... Awareness of Celiac Disease and Gluten – Intolerance Consumers 3.1.2 ... View the full article
    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!
  • Blog Entries

  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
×