Got Dd's Enterolab Results--can You Help?

[Sally's Mommy]

Here's some background info: My DD is almost 4. She is in the 95%ile for height and weight. As a baby she would get a red rash around her mouth sometimes, and I never pinpointed what it was caused by, but my best guess was Cheerios.

Her BMs have always been poorly formed--always soft, and often runny. She has always complained of her tummy hurting.

Anyway, I sent off a stool sample to Enterolab, and here is her result:

Fecal Antigliadin IgA 14 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 6 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 69 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 7 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0604

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

So, should we do further testing? I'm just not sure what to do with this. Her results are almost all normal, and the IgA one isn't that far off. I'm not even sure I really understand the results!

Can anyone help me make sense of this and of what we should do from here?

Thanks so much!!

[CarlaB]

The IgA indicates she is having a reaction to the gluten, but the other score indicates it is not an autoimmune reaction. I'm too new to know how it all progresses, but her immune system is reacting to the gluten, and I'm sure Enterolab indicated this means gluten-free for life. I would say to put her on a gluten-free diet and see how it goes. The low score might just mean you caught it early.

My daughter's scores were much lower than mine. She is 13 and has learning difficulties, but no digestive reaction to gluten. Her first two numbers were 30 and 14. She eats gluten-free and I've explained to her that she just caught it before she had the problems I was having. This keeps her gluten-free and she is very dilligent about it. My first two numbers were 60 and 44, and I had been gluten-free for three months prior to testing.

[mmaccartney]

Fecal Antigliadin IgA 14 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 6 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 69 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 7 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0604

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

What I can tell you is this:

Positive IgA = response to gluten.

Negative ttg / neg malabsorbtion = no actual damage to intestinal villi as a result of gluten sensitivity

HLADQ2 Subtype 2 is a Celiac gene.

So, it appears to me that your daughter (what does Dd mean anyway?) has active gluten sensitivity, without actual damage being caused...yet. With the HLADQ2 gene, she is predisposed to celiac disease, but may never get it.

In a nutshell, the IgA response indicates gluten sensitivity; if she continues to eat gluten, the problems can continue and increase, and (due to genetics) can become "celiac" with intestinal damage being caused.

Hope that helps!

[AndreaB]

Your daughters numbers are similar to my daughters. She was 14, 8, 45 and 7 respectively. From everything I understand she has an active gluten intolerance which means gluten free for life. On the positive side, it was caught before damage was done. She has the one celiac gene (subtype 2) which predisposes to celiac. You don't need any other testing for gluten but you could still test for other allergies if you wanted too.

[Sally's Mommy]

Thank you for your replies. I guess I need to take a deep breath and figure out how to do this now! I actually suspect I may have gluten sensitivity, and I have a 15 year old son with Down syndrome who probably needs to be tested. He has no symptoms, but last night I googled photos of DH and literally gasped out loud when I saw the pictures. I am absolutely positive that his skin issues are DH--even my husband who is skeptical of this whole thing could not believe how the photos of DH mirror my son's body.

I can't decide if I ought to find a GI doctor, a dermatologist, a GP, or anybody who is willing to accept Enterolab results, or not worry about the medical community and just do the diet. I'm afraid if I don't have medical backing, I won't have the resolve to be firm about the diet when I'm faced with school officials, in-laws, etc....

Uggh. A part of me wishes I had never ordered the Enterolab test for DD3 and had remained blissfully ignorant.

[AndreaB]

I know it is a difficult undertaking at first. Especially with the doctors. I'm homeschooling so I don't need to worry about school. I sent the enterolab results to my doctor...haven't heard what she thinks of them. I would get your son's possible DH biopsied for sure. If you let people know the area you are in/or near maybe someone on the board can recommend someone.

Parents can be difficult to say the least...but they are your children. You should be able to show them the enterolab results of your daughter for enough proof for her anyway. The gluten free diet can be just as healthy as any other diet...and as with any other diet we can make it unhealthy buy not eating a variety of foods. I'm somewhat guilty of that. So many children on this forum have had positive diet changes, maybe you could start a new thread asking about help with schools if you don't have an official diagnosis from your doctor.