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Results Of Kids Testing :(


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#16 Mom-of-Two

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Posted 17 May 2012 - 12:37 PM

She is having her endoscopy on Wednesday and I am growing anxious and nervous, wondering if I am making the right choice- given her elevated numbers and my having celiac, on one side it seems silly to put her under anesthesia to "See" it but, my hubby thinks it's a good idea just to KNOW and be able to see that damage, if there is any, and know where she stands.

For those whose kiddos have undergone the scope, anything I should know? It will be at the children's hospital so I am quite confident with her care there, most of my concerns are with the anesthesia and after effects/risks. She has never had any sort of anesthesia or sedation of any kind, no surgeries, no dental work. I did not feel my greatest after I had my endoscopy, I was just icky feeling all that night and the next day, it took me 2 days to really get back to normal, I felt queasy and sleepy, even though I didn't even have anesthesia, just the twilight! :)

I had my 4 year old's labs done today, and will know in 5 days. I am then faced with just putting him gluten-free regardless (with the rest of us) or letting him eat his current diet if he is negative. I feel like given the genetics, he will eventually test positive!

Just a follow up on the lab numbers- the pediatric GI tested for IGG (was 20) and IgA (was 190) serum, and then the tTG was elevated at 78.20 (>20 abnormal she said). So the fact that she has that elevated number means she has those antibodies, correct? You cannot have an elevated test without having true celiac disease- this is correct?

I know, I still have questions after 4 months of living it myself! My numbers were through the roof though, I realize I'm an adult, just trying to understand where we are.

I am going to contact her pediatrician for labs on iron, folate, B12, Vitamin D after all is over with the scope.

Thanks a bunch for any reassurance!
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#17 T.H.

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Posted 17 May 2012 - 02:29 PM

My 13 year old daughter was diagnosed a little over 2 years ago, and we did not have her scoped. My father had been celiac for 8 years and I had just been diagnosed, too, so I felt comfortable having her diagnosed via the bloodtest, and so did her doctor. My brother was diagnosed a couple months later, and my son's test came back negative.

In the end, the whole family went gluten free. Even though my son's tests were negative, he had symptoms that went away while eating gluten free, so I'm very glad that we had him try the diet. We attempted a 2 week eating-gluten trial for my son 1 year after we started the gluten-free diet, but only lasted a week because it was obviously affecting him.

My daughter we had scoped about 6 months ago. She had continuing trouble on the gluten-free diet, so at first we tried an elimination diet and found a few more foods and products that were an issue and dropped them. But even though her health improved, there have been some problems that persisted and we couldn't figure out what was causing them, so we finally had her scoped.

We didn't find anything, but I'm still glad we had it done. However, I believe I would do it the same way if I had to do it again; waiting on the scope for a year or so.

I'm comfortable with the celiac diagnosis, so the only thing scoping would help us with might be to root out other problems. I don't need to see the gluten damage to believe it. But since I was waited for my child's insides to heal from the gluten damage, any other damage would have been easy to identify as 'not gluten.' Or, possibly, a later scope would have helped determine if my child had been healing as she should be or was still having trouble, you know?

It's not for everyone, but it has turned out well for us, having done it this way.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#18 beebs

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Posted 17 May 2012 - 03:29 PM

No, we are obviously going to feed her gluten-free regardless of a biopsy- I would NEVER let her continue a gluten diet with positive blood labs- with the fact I have celiac myself!! My point I guess was is there any other REASON to scope her? I had suspicions the minute I learned I had celiac myself- my first thought was getting my kids tested. It is a relief in a way to know, and to simplify my kitchen since hubby and I are already gluten-free. I just didn't want them to deal with it, you are right, feels like someone kicked me in the gut, I just have to let it simmer awhile and then I will jump into action and do something about it.

The lack of family support is really taking a toll on me. I am lucky that my husband is 150% supportive and knows possibly more about it than I do, he has autoimmune issues as well- psoriasis and psoriatic arthritis, so going gluten-free was something he wanted to try anyway. He is amazing with it, and I couldn't ask for more, problem is everyone else. I cannot believe the response I got today when I told my Dad that she had positive labs- he thinks it's "nonsense" and the whole gluten "FAD" is ridiculous- and proceeded to tell me that 97% of people with celiac go through life with no ill effects---- wow did he get an earful, why do other people think they know MORE about a disease you have??

Frustrating. :(((


My grandad got bowel cancer at 45 after a lifetime of sickly tummy - and a family full of coeliac's. Go through life with no ill effects my foot!

Sorry your family aren't supportive. It must be awful, mine are because they are all coeliac's so they get it.

I'm sure that your daughter would get through and endo with flying colours - but you have already said that you are going to keep her gluten free regardless of the results. If you are coeliac and your daughter has a high positive then I'd probably just leave the endo. Two of my kids have had them, one negative and one borderline and the GI wants them both to do a gluten challenge and repeat endo. I'm not sure what to do either - its so hard when its your kids isn't it?
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#19 1974girl

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Posted 18 May 2012 - 08:56 AM

I have gone through the same thing. My husband is type 1 diabetic and they share almost the same genes as celiac. (Both are Dq2 AND dQ8 triggered) So, when my daughter tested postive on blood, I wasn't sure we wanted to scope. I probably would have gone gluten free if the biopsy was negative because I would have regretted it if she had infertility or developed type 1 diabetes herself. So... we did the biopsy and found out that she also has EE (esophagus issue caused by other food allergies) and she has ulcers. We had to undergo other allergy testing that showed multiple other allergies. So, I was glad we did the scope. As far as celiac, she showed "simplification" which I think means blunting. So we caught it before total villi destruction. If I had not done the biopsy I would have always wondered if she really had it or not.
Now...2nd kid is supposed to be retested next month. I will be ok with just blood with her. She has already had allergy testing and not allergic to anything. So, I am wishy washy. Glad we did it with the first child but won't do it with the second.
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#20 1974girl

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Posted 18 May 2012 - 08:58 AM

[quote name='1974girl' timestamp='1337360209' post='796656']
I have gone through the same thing. My husband is type 1 diabetic and they share almost the same genes as celiac. (Both are Dq2 AND dQ8 triggered)

Just wanted to clarify that there are other gene combinations that cause celiac. Just in our case it is Dq2 and Dq8. My other child is double DQ2.
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#21 Victoria6102

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Posted 18 May 2012 - 09:26 AM

An endoscopy is nothing. I had it done when I was 15 and it is completely fine. It only takes 20 minutes (or less) to do it. Afterwards, she will probably just feel groggy, and maybe a little sore throat. Buy some popsicles!:) by the next day she will be fine. Just when you go home, let her sleep. She'll probably want to sleep anyway!:) good luck! I definitely feel that the endoscopy was worth it! My blood tests were negative and I was getting tested for something else, but even if my blood tests were positive ii would have gotten the endoscopy. I need the peace of mind that I actually do have it, so getting the endoscopy is important to me. Otherwise I'd be wondering my whole life . And do the endoscop now, because if you decide not to, but then later in life she decides she wants to have it confurmed through biopsy, she'd have to go back on gluten to get accurate results.
Hope it goes well
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