7 Year Old Has Two +Ve Blood Tests

[The Horticulturalist]

I'm reposting this from further down the page, I added it onto the end of another thread a few days ago but it seems to have been missed. Please read the short thread here first to get the backstory, thanks!

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Skylark and the rest of the forum, here is an update to the story above.

Short version, my son has long standing nut allergies, I decided to see an allergy Dr in a nearby town about it, really just for some advice.

While there I asked if he would repeat the Celiac panel and include EMA, DGP and repeat the others.Plus the genetic work.

He called my pediatrician who ordered the first lot (Ttg and IgA only - a weak +ve on the Ttg) and then he was very amenable to having his nurse order the bloodwork, he even got the book out with the order codes to make sure that they could get all the tests I wanted.

They sent them to Prometheus - is that regarded as a good lab, I figured it was? No reference range was given for the EMA, it just said "positive" under the results list and had "negative" under the reference range

Here are the results:

Summary Interpretation

Results support a diagnosis of celiac disease

Serological markers for celiac disease detected

RESULTS REFERENCE RANGE

Deamidated Gliadin Peptide Antibody, IgG (DGP IgG) 1.6EU/ml - <4.9EU/ml

Deamidated Gliadin Peptide Antibody IgA (DGP IgA) 2.6EU/ml - <2.6EU/ml

Anti-Human Tissue Tansglutaminase IgA ELISA (TTG IGA) 13.0U/ml + <10.3 U/ml

Anti-Endomysial IgA IFA (EMA) Positive +

Total Serum IGA by Nephelometry (TOTAL IgA) 173mg/dl

Celiac Risk Genes Detected:

DQ8 (HLA DQA1 *03 DQB1 *0302) and other non risk aleles

relative risk MODERATE (I have the same gene)

Still reeling a little from the this, trying to get through to UofChicago Celiac Hotline and speak to the lady there that helped me.

Folks, his symptoms were so mild to almost non existent that I really didn't think they would show up anything, in my head I was simply ruling it out.We have no family history of celiac, but on my father's side there are numerous relatives with general GI problems, one with bowel cancer and two with Rheumatoid Arthritis.

Any ideas on the sharp jump in only a matter of weeks between the two Ttg tests? Do you think the lab makes a difference? He had been eating gluten all the time, perhaps some weeks less than others though.

I am waiting to get an appointment with this group in Atlanta, perhaps as early as Friday next week. they came highly recommended from the R.O.C.K. group person that I emailed with.

[mushroom]

I am so glad that you followed through and got a definitive answer. on the blood work. Yes, Prometheus is considered to be a reliable lab. The development of celiac can be a continuum, with antibodies (and villous damage) increasing with time and continued gluten consumption. This is why it is important to catch it early. Good luck with the Atlanta appointment

[T.H.]

Kudos on double checking on this! One of those tests is very celiac specific - it's really good you caught it early.

One thing to know, now, although the center will likely tell you the same: you probably want to test everyone now. You and your spouse, and any other children. If one person is a celiac in the family, everyone 1 degree separate (parents, children, and siblings) jumps from 1 in 133 category to 1 in 22 category, in terms of having the disease. It's recommended to test everyone.

We did that and found out we didn't have 1, but 4 celiacs in the family, so I'm always pro-blood testing now when it pops up in the family.

[The Horticulturalist]

Kudos on double checking on this! One of those tests is very celiac specific - it's really good you caught it early.

One thing to know, now, although the center will likely tell you the same: you probably want to test everyone now. You and your spouse, and any other children. If one person is a celiac in the family, everyone 1 degree separate (parents, children, and siblings) jumps from 1 in 133 category to 1 in 22 category, in terms of having the disease. It's recommended to test everyone.

We did that and found out we didn't have 1, but 4 celiacs in the family, so I'm always pro-blood testing now when it pops up in the family.

We have one other son, and of course my husband to be tested. I'm sure the insurance company will not cover it until we have the definite diagnosis via endoscopy, so we'll pursue it after we get those results.

T.H. Just out of interest, how many of the celiacs in your family had significant symptoms?

[M0Mto3]

My LO goes for her second set of bloodwork on Monday. She had a negative tTG a few months ago. She is only 15 months, so she probably won't have a positive tTG. I am really praying for a positive result, since we have been struggling with her for a long time. Me and her ped are 100% convinced that is what is going on. I am hoping the GI doc can confirm this for us. So, I can understand your surprise and how it throws your world off to have it come out of left field, but it is so wonderful that you caught it now. My LO has been struggling with failure to thrive for the last 11 months and I just want a positive diagnosis and put this all behind me. Please keep us posted on the endoscopy results and I am interested to hear if you have any trouble getting the rest of your family tested.

[The Horticulturalist]

We are in Atlanta (came from MS) for consultation today with Dr Jeffrey Lewis of the Children's Center for Digestive Health in Atlanta, he was recommended by the Atlanta area celiac support group.

He was VERY thorough in going through all the details with me. He told me where they would take biopsies from, and he said that he had a very experienced pathologist who uses the Marsh criteria. We go in Monday for the endoscopy, we get the biopsy results back the following day so I will report back then.