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11 replies to this topic

#1 ShannonA

 
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Posted 16 August 2012 - 11:26 AM

i just got in my 2 children's gluten sensitivity results.

Child 1
Fecal Anti-gliadin IgA. 144 units ( Normal range is less than 10 Units)

Child 2
Fecal Anti-gliadin IgA 11 Units (Normal range is less than 10 Units)

Milk Protein Sensitivity
Child 2
Fecal Anti-casein (cow's milk) IgA 9 Units (Normal range is less than 10 Units)

My first question is there is such a big difference in the two gluten sensitivity results. Does that mean child 1 has it more severe? I am new obviously and I just recently found out I was gluten sensitive and trying to nurse myself back to health. Should I bring these results to their pediatrician or find a doctor specializing in this? Or just take them off of gluten for a while? Celiac runs on my dads side and a suspected first cousin on my moms side, so it is a possibility for my children. My children are 4 and 8 and have complained about stomach problems their whole lives. The 4 year old literally did not sleep and cried for 2 years. My biopsy was negative for Celiac but he only took 1 sample and I will never get back on gluten for another biopsy. Any
advise as to where I go from here.

Also I called the naturopath office and the lady at the front desk, when told results, said just gradually wean them off of gluten so they don't feel bad all at once and that almost everyone is sensitive to gluten. Is this correct?

Edited by ShannonA, 16 August 2012 - 11:50 AM.

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#2 GottaSki

 
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Posted 16 August 2012 - 11:56 AM

I not familiar enough with the fecal tests to comment other than there certainly is something going on with gluten. I know that IgA levels can vary greatly among celiacs, so it may differ between your kids...curious is the one with the much higher level the older &/or have more severe symptoms?

I'd vote for getting full celiac blood on both your kids, then immediately start them on gluten-free diet. Since they both have symptoms and several family members with gluten issues - it is likely that eating gluten-free will improve their health and certainly will not harm them. Added bonus is all three of you will be eating gluten-free - it can be difficult to feed young children gluten and avoid all cross-contamination to you.

Good luck to you all :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#3 GottaSki

 
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Posted 16 August 2012 - 12:01 PM

Also I called the naturopath office and the lady at the front desk, when told results, said just gradually wean them off of gluten so they don't feel bad all at once and that almost everyone is sensitive to gluten. Is this correct?

No. It may be true that many people may "feel" better eating gluten free, but it is certainly not true that "almost everyone" is sensitive to gluten. I don't see a reason to wean them gradually. Just make sure you have some of their favorite gluten-free foods at the ready &/or replicate some of their gluten-filled favorites with gluten-free versions.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 ShannonA

 
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Posted 16 August 2012 - 12:47 PM

I not familiar enough with the fecal tests to comment other than there certainly is something going on with gluten. I know that IgA levels can vary greatly among celiacs, so it may differ between your kids...curious is the one with the much higher level the older &/or have more severe symptoms?

I'd vote for getting full celiac blood on both your kids, then immediately start them on gluten-free diet. Since they both have symptoms and several family members with gluten issues - it is likely that eating gluten-free will improve their health and certainly will not harm them. Added bonus is all three of you will be eating gluten-free - it can be difficult to feed young children gluten and avoid all cross-contamination to you.

Good luck to you all :)

Yes older one has higher level & more fatigue. Also a full celiac panel will be quite expensive and so what would be the most cost effective route to go. I've already spent close to $26,000 on myself, I was near death for a year, so money is limited.
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#5 Takala

 
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Posted 16 August 2012 - 02:27 PM

There are two kinds of kids, the kind that eat anything, everything, and the .... other kind. If you've got the really, really picky kind, especially the picky kind stuck on eating just the same few things over and over again, it might be better to ease them into it, like over a week or so, (after testing) so they don't automatically balk at the thought that this "new gluten free stuff," they think they hate, is some sort of punishment. If they already associate food with discomfort, they can have a bit of a meltdown when confronted with the lack of the "favorite item," or the substitute, at first, from what I've read about toddlers/preschoolers. You don't want to get into any battle royales over it. And then there is the "school" problem where in some situations they are slinging gluteny cupcakes and pizza around for celebrations constantly. :ph34r: You will want to have a stash of this sort of thing in your freezer, slices of gluten free pizza and individual servings of cake or cupcakes, so you can take one out to send along, so the kid doesn't feel left out. It's fairly easy to find gluten free candies, by comparison, which meet the taste test.

For example, if you can get them to eat rice cakes, and if they already do peanut butter, you can take marshmellows (Kraft, or kosher ones) and those chocolate chips that are allergen free (Enjoy Life), maybe some coconut flakes or craisens, and make all sorts of rice crispy type treats, without having to purchase the more expensive gluten free rice crispie type puffed rice cereal.

This can work out better than if you buy a $5 box of gluten-free cake mix, add another $2 of ingredients, and discover you don't actually care for the flavor of that flour mixture, and the kids hate it. Or they have a textural problem. My spouse who is not gluten free, but who eats gluten free at home, can always tell when there is rice flour in anything. He'll eat it anyway, but he always notes "this has that grainy rice flour texture to it" and he's said the same thing in restaurants, if he tastes something first. I don't really notice, but I think this is funny.
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#6 GottaSki

 
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Posted 16 August 2012 - 02:31 PM

Most cost effective is to go completely gluten-free and monitor changes in symptoms.

Get yourselves healthy - then worry about testing/gluten challenge down the road if one of your kids questions their need to be gluten-free.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 Takala

 
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Posted 16 August 2012 - 02:54 PM

Ah, but blood tests first, THEN diet change, or the tests won't show anything, if you are going to test for a baseline. :)

http://www.celiac.co...ests/Page1.html

The endomysial and anti tissue transglutamimase antibody tests are supposed to be the most accurate, but if you have low IGA, it can skew the whole thing.
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#8 GottaSki

 
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Posted 16 August 2012 - 02:54 PM

In case you are interested...I did find a source for a celiac panel without a doctor - one of my kids is considering a gluten challenge within the next year as his original celiac panel was negative. He has had improved health since going gluten-free, but he doesn't have as severe reactions to accidental glutenings as his siblings hence the question in his mind - with good reason.

http://www.healthche...ehensive/63473/

Have no idea if these can be done where you live...just thought I'd throw it out there.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#9 ShannonA

 
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Posted 16 August 2012 - 03:53 PM

Ah, but blood tests first, THEN diet change, or the tests won't show anything, if you are going to test for a baseline. :)

http://www.celiac.co...ests/Page1.html

The endomysial and anti tissue transglutamimase antibody tests are supposed to be the most accurate, but if you have low IGA, it can skew the whole thing.

Thanks! I would of started the diet before the blood work. My mind is not clear these days.
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#10 ShannonA

 
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Posted 16 August 2012 - 03:58 PM

In case you are interested...I did find a source for a celiac panel without a doctor - one of my kids is considering a gluten challenge within the next year as his original celiac panel was negative. He has had improved health since going gluten-free, but he doesn't have as severe reactions to accidental glutenings as his siblings hence the question in his mind - with good reason.

http://www.healthche...ehensive/63473/

Have no idea if these can be done where you live...just thought I'd throw it out there.

Thanks for info, they have a lab in my town and a reasonable price too!
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#11 Skylark

 
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Posted 17 August 2012 - 10:01 PM

Your kids' response to the diet means a LOT more than fecal IgA. It's not a terribly reliable test, though a result of 144 is certainly interesting. Little kids don't always have a strong immune response so the older's test results might simply be a reflection of his/her more mature immune system.

As other folks have said, you can't have them tested for celiac once they're off gluten. If your insurance won't cover celiac panels and it's beyond your means, you might consider getting a home TTG test kit and at least testing the older who has a lot of fecal antibodies. http://www.glutenpro.com/

I hope going off gluten helps their stomach-aches! Obviously follow your naturopath's advice as far as tapering and how long to try the diet once you've done whatever celiac testing you feel is appropriate.
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#12 ShannonA

 
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Posted 18 August 2012 - 11:20 AM

Thank you! I can't wait to get them off of gluten, I know it will make a difference. My 8 year old is so fatigued constantly, I just want them to feel good all the time.
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