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Totally Confused


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#1 MaryanneQ

 
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Posted 10 June 2004 - 04:15 PM

My 6 yo son, Nicholas, last summer was referred to a Gastroenterologist by our Endocrinologist because she ran the celiac blood panel (TTg, IGA and IGG) and 2 of the three came back with very high positives(I cannot remember which one was negative maybe the Iga? TTG was definitely positive) So he went to have a biopsy done and it was negative? The biposy was done by a Ped GI who works out of a children's hospital and is VERY familiar with celiac disease, in fact the same day as my son he had 3 other children who were positive so it's not liek he didn't know what he was looking for.

ANYWAY -The Dr consulted with some other DR's and they decided to rerun the blood tests sending them to some lab in BUffalo instead of to Quest etc and we just did that. Before the test results came back we were given instructions to start a one year gluten-free diet. We'd track his growth and then do a gluten challenge and possibly a repeat biopsy.

We started just the diet Monday but today got the results back from all of his tests. Everything was normal. He ran absolutely every test - it was 10 vials of blood and and 72 hour fecal fat collection and EVERYTHING came back normal (aside from his standard anemia issues). He did say though that they did some genetic test and Nick DOES have the genetic disposition to have Celiac?!?!? But everything else was normal. We were told to keep going on the gluten-free diet just to see what happens and they'll check growth and do a challenge in 6 months.

To be honest I am VERY upset :*( I thought this was IT, thought this was the answer to so many of his problems. Alot of stuff didn't fit with Celiac Disease but ALOT of stuff did :*(

He's VERY small - At 6 years old he is 29 lbs and 39" tall - the size of a 2 year old. He has chronic anemia, HORRIBLE teeth , attention issues(Not ADD or ADHD but very short attention span) speech issues. WHat he doesn't have is the intestinal problems - he has regular bowel movements, he will have diahrrhea(sp?) maybe once a month, but definitely not regularly. He doesn't complain about his belly hurting etc.

Any ideas please? Is this it or not? I just thought we hand an answer, after dragging him to so many specialists I got excited because I though we had found the key to unlock everything - kwim? I know it's nuts to wish this was it but it just seems like such an "easy" answer to so many difficulties he has had his whole life :*(

Opinions please?????

:*(

Maryanne
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#2 Guest_jhmom_*

 
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Posted 10 June 2004 - 06:52 PM

Maryanne:

All of my blood work and biopsy came back normal too but I DO have Gluten sensitivity, as I decided to get tested through Enterolab, they test the stool which is more sensitive than blood and more accurate too! My GI doc told me that sometimes it takes time for a disease to show up in the blood.

I agree with the docs on at least trying the gluten-free diet to see if he shows an improvement in his growth. I know this is not the answer you wanted but you are on the right track so just hang in there! Also just because your son doesn't have the "classic GI symptoms" does not mean he doesn't have Celiac, there are many people that have anemia and other problems (not GI).

I hope your son has a HUGE growth spurt and does well on the gluten-free diet!
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#3 MaryanneQ

 
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Posted 11 June 2004 - 04:48 AM

[/QUOTE]I hope your son has a HUGE growth spurt and does well on the gluten-free diet! [QUOTE]


I have no idea if I quoted from your post right or not - but thank you so much.

So many people think I am nuts. I should be happy this may not be it, why are you upset this is good news etc...

This is NOT good news. The good news was that they thought he definitely had celiac disease. The good news was that after 6 years we possibly found the reason for so many of my son's issues. The good news was that it was something we could CORRECT, something that would take a little work but something that COULD change his life around. It was one of the best presents I have ever been given and now I feel like it's being taken away. I was given hope for an answer and now I'm just not so sure.

I don't know if I shoudl remain positive - what if he doesn't grow after being on this diet? I will be crushed :*(

I'm just so terrified that this isn't our answer :*(

It feels so good just to vent to people who won't think I'm nuts.

Maryanne
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#4 Guest_jhmom_*

 
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Posted 11 June 2004 - 08:31 AM

Maryanne,

I understand what you mean but just hang in there. How long has he been on the diet? I am sure others will be along shortly that may have children in the same boat, my daughter never had growth problems but still has celiac disease so I don't know how long it should take to see an improvement. Just make sure he is 100% gluten-free, have you been around the site to check out the Safe and Forbidden food and ingredients ? Also here are some list of gluten-free foods so that you can print them out and take them to the store to make sure you purchase gluten-free food!

http://www.clanthomp...info_lists.php3

Mainstream gluten-free products

http://homepage.mac..../GFfoodlist.pdf

Good luck to you and your son :D take care
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