Help! Newly Diagnosed 6 Yr. Old. Some Questions...

[Sierra's Mommy]

Okay, so we were able to push Sierra's biopsy to today! We have just returned, and while the GI said things looked good, she said she wanted to wait to get the biopsy back before making a final diagnosis.

I also received the bloodwork panel results in the mail. Apparently, they did two tests; results are below:

TTG Aby IgA: 66.9

TTG Antibody, IgG: 14.1

I am leaning toward putting her on gluten-free diet, no matter what the biopsy results determine. Your thoughts?

THANK YOU!

~julie

[Woody6]

Okay, so we were able to push Sierra's biopsy to today! We have just returned, and while the GI said things looked good, she said she wanted to wait to get the biopsy back before making a final diagnosis.

I also received the bloodwork panel results in the mail. Apparently, they did two tests; results are below:

TTG Aby IgA: 66.9

TTG Antibody, IgG: 14.1

I am leaning toward putting her on gluten-free diet, no matter what the biopsy results determine. Your thoughts?

THANK YOU!

~julie

Wonderful news you could have the biopsy today. Awesome! If it is negative going gluten free is great especially with the positive celiac panel. If the biospy is negative it just means your sweetie hasn't gotten sick enough to get to the lesions part and if you go gluten free and the symptoms she has been having disappear and she starts thriving...wonderful....she will never have to experience leisons.

Word of caution, if you still have symptoms or troubles also eliminate dairy for a period of two to six months along with eliminating the gluten and then reintroduce the dairy slowly after six months. It gives the body time to heal even if there is no visible damage yet.

does the bloodwork show these ranges to determine if positive or not? If not, what are the ranges on the bloodwork report? These ranges might be correct if not others can probably give you the correct ranges.

Ab IgA:

19 or less - Negative

20-30 - Weak Pos.

31+ - Pos.

Ab IgG:

19 or less - Negative

20-30 - Weak Pos.

31+ - Pos.

TTG Ab, IgA:

7.0 or greater, positive

[Lisa]

we are discussing the bloodwork...celiac panel specifically. if it is negative then the doctor needs to look elsewhere but if the panel is positve then the person has one of the three characteristics or stages of celiac....that I listed. Only the symptomatic stage or acute stage (I personally call it acute) in which there will be actual lesions on the intestines that will show up on a biospy. The other two stages or characteristics of celiac will not produce the lesions on the intestines so when a biospy is done it will come out as negative for celiac and that is not true. All it means is that the person hasn't gotten sick enough to have the lesions develop but they will get the lesions over time if they continue to ingest gluten. It is just a matter of when..... The doctors still use the lesions as their golden standard of diagnosis when they should not. Their arguement is because living gluten free is a life long very restrictive diet. That is the arguement for the lesions being necessary for the golden standard of diagnosis but the community is slowly changing course to diagnosis will less evasive means which may mean they will forego the biospy as the 'golden standard'.

Once a person is a celiac or has had a positive celiac panel and has been completely gluten free for a year and a new celiac panel is done then at that time the celiac panel should be negative. All that means is the person successfully removed gluten from their diet it does not mean it is a false negative or that they no longer have celiac disease.

Woody6,

May I suggestion something? I would suggest spending some time walking around this site. It has some very valuable information that you might find interesting. Celiac Disease is not as black and white as you seem to understand. Benefit from the years of experience found here. You might find it enlightening.

A review of our Board Rules, might be in order as well.

[CeliacMom2008]

Holy cow! After all that commotion you still want our OPINION?!?!?! Well since you asked...

I don't think it can hurt to try the gluten free diet. If I were in your shoes I'd do it. It can be challenging in the beginning but it is really worth it and not bad once you get the hang of it.

I'm so glad you were able to get the biopsy moved up. It is so hard to watch our kids be sick. Please do let us know the results.

Good luck!!

[OptimisticMom42]

Wow some of you are really harsh. Makes me wonder if I'm in the wrong place. My doctor didn't even bother with the blood work. One look at my elbows and I had a diagnosis. Oh, he has treated five members of my family for over ten years. He ordered my sons bloodwork today. My child will not be suffering through a biopsy as I refused to have one done myself. I'm squeamish about having things put in where things should only come out. Have a good day!

[psawyer]

Wow some of you are really harsh. Makes me wonder if I'm in the wrong place.

The activity today in this topic, and one other, is not typical of this board. If somebody is in the wrong place, it isn't you.

I'm squeamish about having things put in where things should only come out.

Are you perhaps confusing the endoscopic biopsy procedure with a colonoscopy?

[Woody6]

Woody6,

May I suggestion something? I would suggest spending some time walking around this site. It has some very valuable information that you might find interesting. Celiac Disease is not as black and white as you seem to understand. Benefit from the years of experience found here. You might find it enlightening.

Thank you for that suggestion and I do plan on it but at the same token the information I've provided is equally correct and should be shared with the community. I have read many of the sites provided even in this specific thread and yes all doctors have the biospy as the golden standard. The problem is lack of lesions does not mean a person does not have celiac disease. It just means the disease has not progressed to the stage of lesions. Think of cancer. (may be a bad example but non the less)...cancer has four stages...it is still cancer. Look at celiac it has stages or characteristics...you can even have Celiac disease with lesions and no symptoms...which is consider asymptomatic celiac disease but you have Celiac disease. That is the basic arguement I'm throwing out there. A positive celiac panel with or without lesions in the intestines = celiac disease. Go gluten free. Get the biopsy if you wish but if you choose not to that is okay to. The doctors should not demand it. Doctors have gone on record numerous times throughout many cited sources that the reason for the lesions being the golden standard is only because of how restrictive the livestyle is to live gluten free. Do you that that is appropriate since lesions will develop eventually down the road if gluten is continued to be ingested. The top US Children's Hospital is telling the medical community there are no false postives in a celiac panel (new information surpasses and supercedes old information). If that is positive then a person has one of the three characteristics of celiac....the worst being the one with the lesions.

[Lisa]

characteristics of celiac....the worst being the one with the lesions.

I still do not understand what you keep refering to as lesions? That is not a term used here. The most severe stage of Celiac Disease is called Refractory Sprue. Are you refering to Intestinal Lymphoma?

[Mtndog]

Hey Gang-

Let's not forget how this topic started - we have a new mom with a newly diagnosed 6 yr old on board and she is looking for some help.... remember when you first found out by testing or not testing, through trial and error, diet, miserable doctor, etc etc. how difficult this can all feel in the beginning?!

Let's help her and not make the entire situation feel worse. However it is discovered, diagnosed etc all I can say is our family has been gluten and wheat free for almost 6 months. And yes, we have had tough days, what to buy in the grocery, how to handle a bday party, what to do for school lunch, but when we look at how far we've come we take a deep breath and thank the heavens that we now know what the problem is regardless of how it was diagnosed!! We can see our kiddos feeling healthier every day, we can see that the brightness in their eyes has returned and the hugs are even bigger and better than before.

So Sierra's Mommy - give yourself and your daughter a great big hug! There is lots and lots of support here for you, regardless of how you came to be here!

The Kids Folks

Well said! Yes- encouragement and support! That's great you were able to push her biopsy to today and that thinks look good. IMHO trying the gluten-free diet never hurts!

Wow some of you are really harsh. Makes me wonder if I'm in the wrong place.Have a good day!

The key word is some but NOT most. Most of us are happy, supportive and encouraging. As Peter said, if someone is in the wrong place, it is NOT you! Topics get heated ccasionally but there is a wealth of info on this board thanks to its members.

Rule #1 Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.

There is a difference between disagreeing and quarreling and it's walking a fine line here!

[Sierra's Mommy]

In reply to the comment about the "commotion", I don't mind heated debates. I welcome all opinions, especially strong ones borne from passion and individual experience. It is only from the gathering of collective experiences, opinion and data that I am able to make decisions that are right for my family. Of course, my own instincts as Mommy trump everything!

Incidentally, our PED GI told us today that if the biopsy came back negative, this meant that our little one had a "predisposition" to Celiac and that a future event might advance the disease. It does appear that this disease has a lot of labels, stages and evokes a lot of strong opinions. I really appreciate everyone's thoughtfulness. Our little girl did so well today, and is at this very moment, coloring quietly at the table.

I'll keep posting--and I'll keep you posted on our progress! Thanks again---to all!

~julie

[sugarsue]

Sierra's Mommy, I love your dd's name by the way, that's my 7 yr old's name too! Glad you got the biopsy moved up. Good luck with it all!!

[Sierra's Mommy]

Thanks! She is as sweet as her name! I appreciate your kind words. We should hear the results of the biopsy by Monday. In the meantime, we've opted to go gluten-free, in an attempt to heal her so she is well enough to go back to school. She's been out one week!

Thanks,

Julie