Re: How many.....

[Guest guest]

I was lucky with my son. His blood test was slightly positive, his endoscopy was inconclusive, but his GI doc didn't want to take the chance with all the possible side effects of undiagnosed celiac.

--loriann aka Victree the Christian clown

[Guest guest]

So tell me this.... I realize that there simply has to be a line drawn

between what they believe is a positive result, and what they beleive

is negative.

But, in my opinion... if there is any kind of a reaction, it's got to

be some sort of an indicator of something, right??

Her TtG was 3, they said it should be less than 5 to be negative.

Doesn't 3 indicate *something?*

And, where the " negative " IgA result was supposed to be less than 10

to be negative, hers was 9. 1 " point " higher and it would have been

positive. Doesn't that also say that *something* is going on?

We decided to go GF regardless of the results of the biopsy. I guess

I'm just paranoid. Her GI doctor already said that he felt a GF diet

would benefit. I just don't want them to call me tomorrow and say,

" biopsy was negative, she's totally fine " ---- because I know that's

not the case.

[Guest guest]

When my son was 2 (about 10 years ago), he was failure to thrive. His weight and height fell under the growth chart. He had diarrhea 6-8 times a day. Our pedi was perplexed until I asked him if my daughter's rash could be celiac related. My MIL and husband both had DH, so that was the reaction we were used to seeing. The pedi had an AHA moment and sent my son to a pedi gastroenterologist. My son had a laboratory workup for celiac and cystic fibrosis. I was so sure that it was celiac that I put him on a gluten free diet before getting the results back. The results of the diet were immediate and dramatic. No more diarrhea. His height and weight began an immediate climb. The blood results- negative. We were offered a biopsy, but it was not encouraged. Our pedi's response was that if a gluten free diet works, then it's celiac. He's now a healthy, somewhat pudgy, almost 13 year old. He gets diarrhea with minimal accidental gluten ingestion.

My point is, I think the lab work is iffy, and villi damage can be patchy. It's great to get the tests done to see if you can get the lab work and biopsy results to verify what you are thinking. But sometimes the testing misses people who would benefit from going gluten free. If the diet works, then gluten free is best.

JMHO

Re: How many.....

So tell me this.... I realize that there simply has to be a line drawnbetween what they believe is a positive result, and what they beleiveis negative.But, in my opinion... if there is any kind of a reaction, it's got tobe some sort of an indicator of something, right??Her TtG was 3, they said it should be less than 5 to be negative.Doesn't 3 indicate *something?*And, where the "negative" IgA result was supposed to be less than 10to be negative, hers was 9. 1 "point" higher and it would have beenpositive. Doesn't that also say that *something* is going on?We decided to go GF regardless of the results of the biopsy. I guessI'm just paranoid. Her GI doctor already said that he felt a GF dietwould benefit. I just don't want them to call me tomorrow and say,"biopsy was negative, she's totally fine" ---- because I know that'snot the case.

[Guest guest]

Thank you for the response. My daughters lack of growth was what

caused the allergist to send her for a Celiac panel to begin with. At

2 years of age, she was 28 lbs. Now at a couple weeks from her 5th

birthday, she's 30 lbs. Her growth " curve " is more like a curve that

flattens out, and then dips backward. =(

I have to say.... she's never really had a " solid " bm in her life. She

has had chronic sinus trouble and we just assumed the " gunk " was

making her poopies runny/mushy. And, she'd have the same 6-8 NASTY

bm's a day.

She had tonsils/adenoids out to help with the sinus trouble, but the

" D " persisted.

She went " officially " GF at 9:00 pm on 6.12 - and yesterday she had a

REAL.... SOLID bm!! It was actually very exciting for me!! =)

Kris

[Guest guest]

My son had 80 IgG and "normal" biopsy. We did the gene test and he had both celiac genes HLA-DQ8 and DQ2. We went GF and the results were remarkable. He was only 10 and after about a week HE said, I will NEVER eat gluten again.

The genetic testing is good, because if you don't have the celiac gene, it is HIGHLY unlikely you have celiac disease.

Trust your instincts, you know your child.

in GA How many.....

I'm wondering, how many of you are out there who had "inconclusive"blood tests, followed by a negative biopsy, who have actually gone GFand had positive results??My little girl had her endoscopy yesterday. She has ulcers in hersmall intestine, which right off the bat could be the cause of all hertummy troubles. However, when she had her blood tests done, they wereinconclusive. Negative on the "celiac specific" stuff, but IgG levelswere significantly elevated (I was told that less than 10 isconsidered "normal" and hers was 72) and everything else was very highnormal. I should have the results of the endoscopy Friday. But, I'm just readyfor them to tell me that it's negative. But, when we first learned ofher wheat allergy, she had a VERY positive reaction to the removal ofwheat/gluten in only a week. At the end of that week I ws told to keepfeeding it to her until after her endoscopy. I limited the amount shegot, but she did eat it.So, back to my question..... Thank you,Kris

Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.

[Guest guest]

>> I'm wondering, how many of you are out there who had "inconclusive"> blood tests, followed by a negative biopsy, who have actually gone GF> and had positive results??Your daughter sounds like mine....Aside from 2 low secretins and 1 positive celiac gene, ALL Gabby's tests came back "normal"--blood, urine, stool, endoscopy--her villi are fine! Taking her off gluten finally ended the bounce between runny/rock-hard stools, not having a bloated belly (tho it's still prominent!), and--BIGGEST-- knowing the difference between tummy ache & the urge to go to the bathroom! YIPEE!

In the past 2 months (4 months gf yesterday), Gabby has gained 2.5 pounds & 2"! Last August she stopped growing...held at 18.5 pounds/33"!!!! What 2.75 to 3.5 year old does NOT grow or gain weight??? A kid with real troubles....So, I'm glad we finally discovered the gene & the low secretins. Why she's "normal" on all tests is beyond me--but we're doing fine on the gf diet. )

Laurel

[Guest guest]

I understand completely, Kris! I'll pray for more improvements.

Tara C.

-----Original Message-----From: SillyYaks [mailto:SillyYaks ] On Behalf Of MinnichSent: June 16, 2006 10:17 PMTo: SillyYaks Subject: Re: Re: How many.....

Isn't if funny what we can get excited about? It's just a matter of time before she starts gaining.

Hang in there. Things will improve now.

Re: How many.....

She went "officially" GF at 9:00 pm on 6.12 - and yesterday she had aREAL.... SOLID bm!! It was actually very exciting for me!! =)Kris

[Guest guest]

No kidding! She’ll be one of the few

children to actually wear out her baby clothes! Soon though, I’ll bet,

she’ll get some big girl clothes!

Laurie

lbilyeu@...

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Laurel S

Sent: Sunday, June 18, 2006 1:11

PM

To: SillyYaks

Subject: Re: How

many.....

>

> Laurel,

>

> I'm glad to hear the update on Gabby.that's a lot of growth. Enough to

force

> you to go shopping for the next size in clothes, I'll bet! Yahooo! Unfortunately,,,,NO! I can't believe she still wears mostly 12

month stuff!

>

>

>

> Laurie

>

>