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Endoscopy For A Second Child With Positive Blood Test?


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6 replies to this topic

#1 Mdhriggin

 
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Posted 24 September 2012 - 04:55 PM

Okay, so I need some advice. My daughter was diagnosed with celiac disease at 21 months via blood test and endoscopy to confirm. That was 2.5 years ago. My husband also has celiac (found out after my daughter was diagnosed). Now my almost 15 month old son was showing symptoms, so I had them do the IGA and IGG tests - came back positive. We had switched him to a gluten free diet right after the blood test. My question is do I do the endoscopy? Given his age and the family history, I don't really want to put him through that, especially since his behavior, mood, and gastro functioning are better every day gluten free. Thoughts? In addition, the nearest peds gastroenterologist is 2 hours away.
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#2 GottaSki

 
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Posted 24 September 2012 - 05:05 PM

Hello!

Positive blood tests + Father + Sibling + Positive Dietary Response is enough information to make the endoscopy optional - in my opinion. I'd remove all gluten and re-test his blood at six months and then annually thereafter.

Good Luck :)
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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 Mdhriggin

 
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Posted 24 September 2012 - 05:46 PM

That is what I was thinking - we'll see if the pediatrician is on board tomorrow. My thought would be I would rather do a genetic blood test first at this age given how unreliable they are with kids so young. My daughter has a violent reaction to being glutened, and my son seems to be developing a similar reaction.
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#4 nvsmom

 
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Posted 25 September 2012 - 07:49 AM

I'm sorry your son has tested positive. :( But it's great you caught it so young.

As I see it, a positive test, whether it's a biopsy OR blood test, means he is a celiac. I wouldn't even bother with genetic testing. His dad and sister have it and there is a genetic link; I think that genetic test is only useful for kids who are showing symptoms but don't test positive so parents want to know if there is a chance the child could have celiac. Since you already know that he (unfortunately) is celiac, he most likely has the genes for it. KWIM?

I agree with Lisa. If you do any more tests, I would just retest the celiac panel is 6 months to see how the diet is having a positive effect.

Best wishes.
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#5 Mdhriggin

 
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Posted 27 September 2012 - 08:24 PM

@nvsmon - thanks for the reply. While I am disappointed that he is going to struggle to with celiac, my daughter seems to be living with it extremely well and I hope my son follows suit. We are so lucky that we have good doctors (their pediatrician is great) and a really great daycare (they actually noticed and suggested the testing because they had seen my daughter develop symptoms). I'm very much a "make lemonade" kind of person.
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#6 nvsmom

 
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Posted 29 September 2012 - 07:33 AM

Lemonade is always gluten-free. ;)

That's wonderful you have good doctors. it's nice to know that your family is in good hands. :)
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Nicole Posted Image

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#7 Mom-of-Two

 
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Posted 30 September 2012 - 05:28 AM

My daughter is 8 and only been gluten free a couple months (already gained 3 lbs :) we only found out after I was diagnosed back in Jan. no real symptoms in her (vitamin D deficiency) but she is happier and healthier than ever gluten free, has no problems and all and basically no transition. Retest 4 months from now and also see if her D is up.

My youngest is 4.5 and tested negative when we had them tested. My GI says to test him every few years or sooner if he develops signs, if he gets positive labs down the road, no biopsy, gluten free with the rest of us :) everyone eats gluten free at home, so he only eats it at preschool twice a week and the occasional party, restaurant, etc.

I would say absolutely no biopsy- you have all the information you need! I hope your little one feels much better on the diet! :)
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