10 Year Old Son's Labs

[nvsmom]

  Way to go, Mom.

[ahearnsberger]

On September 7, 2015 at 12:28:27 PM, plumbago said:

Hello,

 

You didn't say what age your child was. I understand your fears that the docs will just want to do the small intestine biopsy. That is probably true. However, if he hasn't grown in two years, is it possible that - if he has celiac disease - he's had it for a while now? Again, because we don't know the age, I can't tell the normal growth rate of children that age. There are ages when growth rate is slow (for everyone, on average).

 

So it looks like he tested positive for one gene, but not both, right? According to a video I watched By Dr Hasan Hasan from 2011, it seems both must be present for a positive diagnosis ("the deamidated gliadin has high affinity to HLA2 and HL8 which you have to have if you have celiac disease"), but our knowledge is expanding or being corrected all the time. And I may be wrong. Please double check.

 

As for the labs:

 

Immunoglobulin A: 137. (Range 71-397)

Transglutaminase IGA 8.0 (negative < 4.0, weak positive 4.0 - 10.0, strong positive >10)

 

The first one. The reason this test is done is to see the total levels because some people are IGA deficient which can be cause for a false negative result. People with celiac disease suffer from low total levels more frequently than the general population.

 

tTG-IgG (transglutaminase immunoglobulin A), the second one - this enzyme deamidates gliadin which is a broken down component of gluten. In reaction to the presence of TTG, the IGA is produced. Raised IGA indicates short term immune response - 2-4 weeks -to presence of d. My notes say that this is not a 100% specific, that there are other causes of a positive TTG IGA test such as diabetes, heart failure, Crohn's and others.

 

Transglut AB IGG 3.6 ( negative < 6.0, weak positive 6.0 - 9.0, positive > 9.0)

 

This test measures long term immune response to gluten (3-6 months sometimes up to a year preceding the test). Why this was negative if the TTG IGA was positive is not something I can explain easily or at all.

 

The last two tests basically are looking for reaction to gliadin. Maybe you know all this.

 

They didn't do EMA as you said, wihc is specific (>95% and >90% sensitive). According to my notes, "EMA antibodies correlate to degree of villous atropy." One thing you could do is call them back up and be firm and request the EMA.

 

People are going to tell you different things. I myself don't have much experience dealing with children, but it's a critical time obviously. Off the top of my head, the only thing that occurred to me is if you don't want to do the biopsy, then you could just start now to eliminate gluten and see how that goes. There are many necessary vitamins and minerals added to bread products with gluten, so just be aware of all that if you do go gluten-free.

Plumbago

I thought the gene was HLA-DQ1 & HLA-DQ2. No?

[plumbago]

6 hours ago, ahearnsberger said:

I thought the gene was HLA-DQ1 & HLA-DQ2. No?

Hello,

Good catch. I've seen the Celiac genes written the way you wrote but I've also seen them referred to differently (HLA-DQA1 and HLA-DQB1; or HLA DQ2 and HLA DQ8), but I think the way I wrote it was wrong. I don't know enough about genetics to articulate what the difference is in the different way it's referred to, but as I like to say, it's worth more research. (Also, I am now not sure you have to test positive for both genes as I mentioned originally, I think it's just one.)

Thanks for bringing that up. It's good to have accuracy in a thread.

Plumbago

[ahearnsberger]

I'm just trying to understand my test results. This has been a long road. Thank you for your input. 

[mommida]

I'm glad the testing (even though it was a hard long road) was done in such a positive way.  To be presented with information at diagnoses is such a positive reinforcement.

Some advice for a child's diagnoses...

Keep gluten food snacks and treats available/on hand at all times.  Not being able to eat with everyone else sucks.  Unexpected food celebrations come up all the time.  Having a cupcake in the freezer to join in on the celebration is priceless.  Being on a gluten free diet should never be punishment excluded from celebrations.  Only being prepared can stop that from happening.

[Corrie]

Thanks for the advice, mommida! I am used to bringing snacks for myself, but I'm an adult and can more easily deal with the unhappiness of being the only one without a dessert. I definitely don't want Grant to feel left out and if I can prevent it, I will. 

ahearnsberger, I read on some info printed at the bottom of my son's genetic testing labs that 90% of celiacs carry DQ2, 5-10% carry DQ8, and the remainder carry half of the DQ molecules. Statistically, one would have to be positive for one, both, or half or one or both genes. There are some people on this forum who do not have any of the genes, but do have celiac. Does that help you at all?

[ahearnsberger]

It really helped. I honestly had no idea. Thank you, thank you.