And The Results Are In........

[Brooklyn528]

Hello. Well, my day has not been the best I must say. I apologize for the length in advance.

I'm wondering if anyone can help me decipher the bloodwork that I got on my children today.

First, my daughter is 5 years old. She has:

-abdominal pain with bowel movements

-intolerable itching, makes her unable to sit still to read a book even

-bulky stools

-multiple daily stools

-inability to control herself somtimes

-persistent flatulence, stinky

-trouble sleeping

-hard to wake in the morning

-fever

-rash

-anxiety

Her blood work came back as:

Quantitative IGA : 77 MG/DL normal: 33-235

TTG IGA: <3

Gliadin Antibody (IGG, IGA)

IGG Gliadin Antibody: 22 H

Reference Range- >17 =Positive

IMMUNOLOGY:

HLA-DQ2 POSITIVE

HLA-DQ8 POSITIVE

HLA-DQA1 03

HLA-DQ1 05

HLA-DQB1 0201

HLA-DQB1 0302

Second, my son is 17 months:

-born three weeks early

-NICU after birth for trouble breathing

-on daily breathing treatments(when "tight")

-numerous upper respiratory infections

-ear infections

-was on a soy based formula

-after age one, tried dairy, he began having trouble sleeping, multiple loose, grainy stools aday, yellow stools, trouble sleeping=== diagnosed lactose intolerant, been off dairy ever since.

-still having multiple stools a day

-lots of different colors

-sometimes loose, others mushy, few semi solid

-extreme mood swings. Happy smiling one second, screaming the next.

-progressively having more trouble sleeping

-offensively stinky stools and gas

-stopped gaining weight

-popping joints

Bloodwork:

Negative for antibodies.

IMMUNOLOGY:

HLA-DQ2 POSITIVE

HLA-DQA1 03

HLA-DQA1 05

HLA-DQB1 0201

HLA-DQB1 0301

FAMILY HISTORY:

ME- Celiac disease 01/09, Autoimmune Hepatitis 09/09

MY MOTHER- Rhuematoid Arthritis 10/09, Hashimoto's thyroiditis

SON'S PATERNAL GRANDMOTHER- Autoimmune thyroid disease, Graves disease

MY GRANDMOTHER- Celiac disease 2007

I'm wondering where I go from here. Our PCP is not very in tune with Celiac Disease yet. I was his first ever diagnosis in January. He suggests referring me onto a pediatric GI. I assume that would be the next step. Does my daughter's bloodwork show positive for Celiac Disease or some other type of autoimmune disorder? How should I approach things with my son? Do I try the diet and keep a diary to see if things improve? Thanks in advance to anyone who looks or replies!

Brooklyn

[tarnalberry]

...

Her blood work came back as:

Quantitative IGA : 77 MG/DL normal: 33-235

TTG IGA: <3

Gliadin Antibody (IGG, IGA)

IGG Gliadin Antibody: 22 H Reference Range- >17 =Positive

IMMUNOLOGY:

HLA-DQ2 POSITIVE

HLA-DQ8 POSITIVE

HLA-DQA1 03

HLA-DQ1 05

HLA-DQB1 0201

HLA-DQB1 0302

I didn't see the value for IgA gliadin antibody listed in your post. The total IgA being positive means that she isn't IgA deficient, so the IgA tests are useful.

Her IgG anti-gliadin antibody is positive. That's one marker for celiac reaction.

Her genetic testing shows that she has both of the genes that lead to the majority of celiac disease. This means she's got the capability of becoming celiac. (Someone else will have to comment on the particular combination of DQ2 and DQ8 and the subtypes, as there *is* research that suggests certain combination of genes/subtypes increase the risk for developing celiac disease over other combinations. I don't remember the details off hand.)

Bloodwork:

Negative for antibodies.

IMMUNOLOGY:

HLA-DQ2 POSITIVE

HLA-DQA1 03

HLA-DQA1 05

HLA-DQB1 0201

HLA-DQB1 0301

Your son appears to show no antibodies in the blood, BUT he is far too young for blood testing to be reliable. (Generally, testing before 2 isn't very reliable at all. Very high false negative rate.) He does have one of the genes that contributes to celiac disease, so he also has the potential to develop it.

I'm wondering where I go from here. Our PCP is not very in tune with Celiac Disease yet. I was his first ever diagnosis in January. He suggests referring me onto a pediatric GI. I assume that would be the next step. Does my daughter's bloodwork show positive for Celiac Disease or some other type of autoimmune disorder? How should I approach things with my son? Do I try the diet and keep a diary to see if things improve? Thanks in advance to anyone who looks or replies!

Your daughter's bloodwork certainly says that she's reacting to gluten in some fashion (though not all doctors will diagnose celiac from just the one antibody test - that doesn't mean they're right... IMHO). Your son's bloodwork isn't finding any reaction but says he's got the potential for it - but it's unreliable bloodwork anyway.

If you are going to take your daughter to a GI, do NOT have her go gluten free. She must continue eating ample gluten if the GI is going to do an endoscopy and take biopsies. (This procedure is not as scary as it sounds - ask others around here how it went for their kids if you're worried.) But, keep in mind that you do not have to do the endoscope. You have the option of trying the diet (strictly, for at least three months) and seeing if there is improvement. This is my own opinion, but in most cases (not all, of course) I do think you should "challenge" with gluten, after the three month gluten free diet, to see if there is a response. This isn't a completely controlled test, but it helps affirm that gluten is the problem. It's definitely NOT necessary if you're comfortable with whatever conclusion comes out of the three month trial.

Some people do care more about a doctor diagnosis than others, and I think it's really important to consider the ramifications of getting that official diagnosis or of not obtaining one if either or both of them have celiac. Being diagnosed with a life-long "condition" like this does make it harder to get insurance (pre-existing condition) in many cases. It can preclude someone from joining the military. But it can make it easier to get school cooperation (even in the form of a 504 plan) and cooperation from family and friends.

I don't think it's an easy decision, but the answer - either way - may be more obvious for one family than another. After taking the time to think about it, go with what you feel most comfortable with, even if others disagree; you're just doing the best you possibly can for your kids, and that's what matters.

[Brooklyn528]

The only other number I have on the results for my daughter says IGA CELIAC PANEL: 79mg/dL. Reference range being= 33-235 mg/dL.