Celiac Panel!

[ShayBraMom]

Well, we saw the Pediatric Gastroenterologist again today! I talked to him about my suspicions, I felt like I was not taken way to seriously. I did however in the end march out of that office with prescription for my son to be retested witht he full Celiac-Panel and for my Bab-daughter the same. Now, my question-

I kept wheat away from my daughter for the last almost 2 weeks, she's doing so much better. No noodles, no bread although she loved it so much. Every night I could see that she slept just a bit better then the night before. It seems like that this seems to other her most during nights, a lot less during the days but then again- morning and lunch she gets only fruit anyway and in between she used to get some bread to munch on and in the evening she;'d get some noodles with us or a Babyjar of food!

I"m ghetting lost in my trail of thought! Again, back to what I wanted to ask!

It has been almost 2 Weeks or so, since she had real wheat stuff, since then only traces maybe! Do I need to put her back onto the old diet first (with wheat in it so we get a clearer testresult in that panel) before we get the bloodwork done?

Also, what if she has the NCGS- the Non Celiac Gluten Sensitivity- would that even show on the regual Celiac Panel or what is the best test for this?

I read about some pretty new Stooltests whic apparently detect this kind of stuff often much earlier then it can be picked up in the bloodwork! Has anyone of you had this hor had it successfully done on your child?

I want proof of all of this, once she'll go to dayccare or school they will want to have proof that she or even my son can not have wheat stuff. I had the school tell me before unless I bring proof of my son not doing well on Cowsmilk they WILL give it to him and not make an exception! this si why I want proof, also doing a glutenfree household is a big step I want proof to support me in this!

[casnco]

Well, we saw the Pediatric Gastroenterologist again today! I talked to him about my suspicions, I felt like I was not taken way to seriously. I did however in the end march out of that office with prescription for my son to be retested witht he full Celiac-Panel and for my Bab-daughter the same. Now, my question-

I kept wheat away from my daughter for the last almost 2 weeks, she's doing so much better. No noodles, no bread although she loved it so much. Every night I could see that she slept just a bit better then the night before. It seems like that this seems to other her most during nights, a lot less during the days but then again- morning and lunch she gets only fruit anyway and in between she used to get some bread to munch on and in the evening she;'d get some noodles with us or a Babyjar of food!

I"m ghetting lost in my trail of thought! Again, back to what I wanted to ask!

It has been almost 2 Weeks or so, since she had real wheat stuff, since then only traces maybe! Do I need to put her back onto the old diet first (with wheat in it so we get a clearer testresult in that panel) before we get the bloodwork done?

Also, what if she has the NCGS- the Non Celiac Gluten Sensitivity- would that even show on the regual Celiac Panel or what is the best test for this?

I read about some pretty new Stooltests whic apparently detect this kind of stuff often much earlier then it can be picked up in the bloodwork! Has anyone of you had this hor had it successfully done on your child?

I want proof of all of this, once she'll go to dayccare or school they will want to have proof that she or even my son can not have wheat stuff. I had the school tell me before unless I bring proof of my son not doing well on Cowsmilk they WILL give it to him and not make an exception! this si why I want proof, also doing a glutenfree household is a big step I want proof to support me in this!

I dont blame you, I would want proof also. I do not have children but I am not sure I would want to subject my child to the affects of gluten. If you are not positive you have cut out all cross contamination and unseen gluten you should still test positive if indeed your daughter is positive. But this is just my opinion. Hope others on the board chime in soon so you have a clear idea how to handle this. good luck. Hope everything turns out for your daughters good.

[Griffin's Mama]

What kind of stool test ? I want to ask my Dr. to do this if it a better test for postive results. Thanks alot ... I'm on hold right now to the Dr. soo hopefully they can answer this but if not I would love to know so I can ask for it .

Taz

[ShayBraMom]

You asked how I know about Stooltest. Read here, this doctor developed a Stooltest whicha apparently is able to detect long before bloodtests sometimes! The Stooltest is done by EnteroLab which is specialized in Celiac and Non-Celiacs! Just read the Article here

Open Original Shared Link

and then click on the highlighted "Stooltest" in the Artcile at the bottom, it takes you right to Enterolab!

[ShayBraMom]

You asked how I know about Stooltest. Read here, this doctor developed a Stooltest whicha apparently is able to detect long before bloodtests sometimes! The Stooltest is done by EnteroLab which is specialized in Celiac and Non-Celiacs! Just read the Article here

Open Original Shared Link

and then click on the highlighted "Stooltest" in the Artcile at the bottom, it takes you right to Enterolab!

[hathor]

My understanding is that one has to be consuming gluten for the blood testing to be accurate. I am surprised the doctor did not tell you this.

NCGS, as I understand it, might or might not show up on blood testing. (If blood testing only gives positive results for celiacs, there would be no reason for endoscopy.) Or it could be that celiac, in the early stages, doesn't show up on the blood test. I've certainly heard of people here who have had negative blood tests, then later -- after more suffering with gluten consumption -- have gotten positive results.

I did the stool testing personally and was satisfied with my results. I first had tried going gluten-free and saw my symptoms improve. I didn't care to go back on gluten, just so I could argue with my doctor about getting tested. It turns out I don't have either "celiac" gene, so I would probably have been told I didn't have celiac and thus no problem with gluten, even if there were a positive blood test. See, most doctors don't understand about NCGS. (My genes have been linked by some researchers to gluten problems, but that awareness is apparently limited in the medical community.)

I don't understand how cow's milk relates to all this. Is it a private or a public school that insists on giving your son milk without "proof" that he has a problem with it? I personally would raise bloody hell with them. What your child eats is up to you, not to them. There are people who believe that cow's milk isn't healthy for anyone and those who object philosophically to its use for animal rights or ecological reasons. Also, a majority of the world's population is lactose intolerant. Is this school adamant about giving milk to them too?

Assuming you need proof, you aren't going to get anything to do with casein from a celiac blood panel. If you go the Enterolab route, you can have testing for both gluten and casein antibodies (also egg, soy & yeast, if you care to go into those also -- I seem to run across a number of folks who have problems with gluten, casein and soy).

[Dianne W.]

We did the EnteroLab stool test on my son when he was 13 mths old. He had been gluten-free for 4 mths by that point (breastfed, so I had changed my diet), but that didn't matter as the IgA antibodies are detected by the stool test even gluten-free for a year or two (if I remember right).

The test couldn't have been easier - just dumping the stool from the diaper into their container! They sent the collection kit (a big Cool-Whip type container and a big ziplock). We had to collect stool from several diapers to have enough quantity. The instructions told us simply to stick the container in the freezer in between collections.

The results proved what we already knew from our elimination diet - intolerances to milk, soy, and gluten. And the gene test showed gluten sensitivity [HLA-DQ 2,3 (Subtype 2,7)]

- but I really don't fully understand the full explanation.

I am very glad we did the EnteroLab test. It was helpful to me to have our suspicions validated. And I have no intention of putting my son back on gluten to do the blood test...not at least until he is much older and can express his feelings with words instead of non-stop crying.

Best wishes, Dianne

[taweavmo3]

I have to agree with what the other poster said about the school.....only the parent can dictate what a child eats at school. In fact, my children's school (public elementary) has clearly stated that they are actually forbidden to influence what a student eats in any way. Some of their funding will get pulled if they tell a child what they can or can not have. If you decide tomorrow that you don't want your child to have any yellow food, that is your right. I would do some more digging around, b/c that's just wrong. I have two kids in public school, and have not had to show any proof of Celiac, or dairy intolerance.

I'm not much help with the other areas.....I'm in the camp of dietary response being a key diagnostic tools. But that's just me, it's not for everyone.

[mftnchn]

Just a note to mention that as I understand it even two weeks gluten-free might give you negative blood and biopsy, especially in a young child as they heal much faster than an adult does.

Also Enterolab does not diagnose celiac, only gluten sensitivity, and according to their website, up to a year after you stop eating gluten.

That's amazing the attitude your school has. Does your child have diarrhea? I wonder if you informed the school that if they feed him/her milk and gluten they will have to deal with diarrhea, whether they might be more apt to cooperate! Ha ha.

The other thing is how is your regular pediatrician? A letter from your doctor, any of your doctors should suffice I would think.