New Here - Need Help With Labs And Questions

[leeirons]

Hello,

I'm new here. I was referred to this forum by the folks at the RealThyroidHelp forum.

My daughter (11 years old) has been having "stomach" problems for he last couple of years. The doctor initially just put her on prilosec, which helped a little, but not consistently. The doctor just recently referred us to an allergist and to a gastroenterologist. Allergy testing revealed lots of inhalant allergies and lots of food allergies. She just started the shots, and has started drops for the food allergies. Based on my own history of autoimmune disease (Hashi's), the gastroenterologist ordered Celiacs tests, done at Prometheus Labs. Here are the results:

Anti-gliadin IgG ELISA: 8.8 (<10.0)

Anti-gliadin IgA ELISA: 0.1 (<5.0)

Anti-human tTG IgA ELISA: 0.1 (<4.0)

Anti-endomysial IgA IFA: Negative (Negative)

Total serum IgA: 25 (41-395)

The gastro pointed out that she has an IgA deficiency, which he said prevents these tests from being able to determine Celiacs, though, in his experience, an IgA deficiency has a high correlation with Celiacs. (I am already researching the immunodeficiency angle and am talking with the folks at the IDF forum.) So he wants to do an upper endoscopy to get some biopsies. One strange thing is that the normal ranges above are what are listed on the doctor's lab report, but the normal ranges listed at the Prometheus Labs website are different: <3.5, < 4.0, and <3.0. If the Prometheus normal ranges are correct, then my daughter also has a high Antigliadin IgG: 8.8 (<3.5).

Questions:

1) Does she have a high Antigliadin IgG? What does this mean?

2) Would Celiac sprue show up in a person so young (11)?

3) Is there some other serum test, such as tTG IgG, that we can do to confirm Celiacs?

4) Could an upper endoscopy and biopsies be helpful, even if she is negative for sprue?

5) Is the Enterolab stool test helpful, even with an IgA deficiency?

Thanks for the help!

[ShayFL]

1) Does she have a high Antigliadin IgG? What does this mean? I personally would say it is high. I learned with my thyroid that "in range" doesnt mean "right for my body".

2) Would Celiac sprue show up in a person so young (11)? It can show up at any age.

3) Is there some other serum test, such as tTG IgG, that we can do to confirm Celiacs? I would ask for those along with Genetic testing to see if she has Celiac genes.

4) Could an upper endoscopy and biopsies be helpful, even if she is negative for sprue? It could diagnose Celiac. But biopsy is only as good as the physician administering it and the person evaluating the slides. She could still be Celiac even with Neg blood and Neg biopsy. BUT she already has a Pos. blood.

5) Is the Enterolab stool test helpful, even with an IgA deficiency? No....she deficient and Enterolab uses IgA. It would only be useful for further genetic testing.

[mftnchn]

I want to mention that it sounds like you are very lucky in your choice of gastroenterologist, most would write it off from what I pick up here. I'd do the biopsy, it could make the determination without a question.

From there I'd say the blood work is suspicious. Enterolab could help but I'd wait until after the biopsy, you can do Enterolab any time until she is a year off gluten. It uses IGA but because it is stool the counts could be a lot higher and still show up. You can call Enterolab and ask them, they are quite nice.

Sounds like you also have a good allergist, doing drops is not that common but an excellent help.

Just remember that neither neg blood or neg biopsy rules it out. I'd start gearing up to do a very good trial on gluten free once the biopsy is done. It takes a lot of preparetion to do it well. So read a lot here and make you plan so you can be as strict as possible about cross contamination during your trial period.

Keep us posted with how it goes.

[leeirons]

Thanks for the help shay and mft.

Just remember that neither neg blood or neg biopsy rules it out. I'd start gearing up to do a very good trial on gluten free once the biopsy is done.

If this is the case, why not just skip the upper endoscopy and biopsy and proceed straight to the gluten-free test? Is their additional information that can be gained by doing the upper endoscopy and biopsy, such as bacterial or parasitic infection, that makes doing the upper endoscopy still worthwhile?

[ShayFL]

The biopsy can tell you the extent of the damage. It can also give an official dx "for the record". There are reasons that you might want the record to state Celiac. But there are other reasons you may not. It could effect her future ability to garner health insurance....."Pre-existing condition". Whether or not to biopsy is up to you.

If she has a positive result with the diet, she will need to declare herself "Celiac" and follow the diet for the rest of her life. She may rebel when she is a teenager....this is normal. And as an adult she decide what she wants to do with her life.

You have only a narrow window of control right now. It might make you feel better to get the biopsy so that if it is POS you know for sure you are doing the right thing with a gluten-free diet (no question!!) and you have the paperwork to show her when she is older and wants to rebel. She wont be able to say....."Show me the proof Mom that I have to eat this way and be a weirdo.....blah blah blah teenager junk".

[leeirons]

It could effect her future ability to garner health insurance....."Pre-existing condition".

We've already been encouraging our children that they should focus their studies on two career choices, and that one of them should be geared toward getting a job with a large company or governmental organization, so that any pre-existing conditions will be covered by the group health policy. (The other career choice should allow them to start their own business or free-lance, if they desire.)

She wont be able to say....."Show me the proof Mom that I have to eat this way and be a weirdo.....blah blah blah teenager junk".

By the way, I'm Dad. No sweat. I get this all the time.

I have the parasite and bacteria question in at the IDF forum, since my daughter is also IgA deficient.

[Darn210]

The blood work does look suspicious and kudos to your doctor for recognizing the IgA deficiency and knowing that the rest of the numbers are not valid. The endoscopy does offer some other chances to check out a few other possibilities. My daughter (age 6 at the time) had acid reflux, was put on prevacid which helped but didn't entirely resolve her issues (sound familiar?). My GI was almost convinced that it was Eosinophilic esophagitis (basically an allergy reaction in the esophagus) which requires a biopsy to diagnose. Since he was in the area, so to speak, he also took biopsies of the small intestine (not really enough for Celiac, but he wasn't expecting to find Celiac).

I had asked if they could test her for lactose intolerance (at the time I didn't know if this was possible). It's a lab test that they perform on one of the small intestinal biopsies. They actually checked all her disaccharidase levels (the sugar processing enzymes). The villi process more than just lactose although that's what we all hear about, so when there is damage, there can be a genralized disaccharidase deficiency and this is actually what showed up in my daughter - that and a positive blood test that was drawn while she was knocked out for the endoscopy.

They automatically checked for the parasites and h. pylori and such. He didn't say he was going to do it and I didn't know to ask. I don't know if its automatically done, but I suspect it is by most GI's since they have the samples to work with.

I might talk to the GI about the possibility of Eosinophilic Esophagitis especially since she does have some allergies. (We did some preliminary allergy testing with my daughter but nothing turned up). I'd also ask about checking the disaccharidase levels, bacteria, parasites . . . I suspect that he will tell you they always do that(well, maybe not the disaccharidase levels), but it doesn't hurt to ask.

As far as the lab ranges go, I would tend to think what was listed on your report is what is correct for the test that was run on your daughter's sample, on that day, by that technician . . . but it also doesn't hurt to ask the GI that question either . . . or if Promethius has a "contact/customer service phone or email" , ask them.

[leeirons]

Thanks for all of the ideas. I definitely want to make sure the doctor makes the most of the endoscopy and biopsies. I'm still getting a feel for how much "patient self-advocacy" he is workable with. He did not attempt to reason with me on the endoscopy, he let me do the reasoning and said, "Okay, we will do it then." However, when I called him back to discuss whether we should do some more immunodeficiency testing before procceding with an endoscopy, he seemed to get a little impatient. He did not think it even worthwhile to get further testing done for immunodeficiencies. If I start discussing pathology testing with him in the prep room at the hospital, he might lose it. At which point, I will tell him that I and my family have been through too much with doctors who don't like patient or parent participation, and that he will just have to get over it with us, since we are paying the bill.

[erstbrmom]

We've already been encouraging our children that they should focus their studies on two career choices, and that one of them should be geared toward getting a job with a large company or governmental organization, so that any pre-existing conditions will be covered by the group health policy. (The other career choice should allow them to start their own business or free-lance, if they desire.)

By the way, I'm Dad. No sweat. I get this all the time.

I have the parasite and bacteria question in at the IDF forum, since my daughter is also IgA deficient.

Our testing did not go thru our insurance. I have told my children that if they ever mention they eat a gluten free diet it is a personal choice like being a vegetarian. I do not want them to set themselves up for pre existing conditions. We switched insurance companies and because my son had ONE prescription for seasonal allergies they refused to cover anything to do with his allergies or sinus' until he had been off all meds for at least TWO years. The career choice of being self employed is not the best option. We own our own company and carry our own insurance. Try spending 12K a year for minimal coverage and no pre exisiting conditions covered.

[hawaiimama]

I like the vegiterian comment. That is a good one. A choice to be gluten-free without the celiac label. After reading about wheat, it really sounds like humans shouldn't be eating it at all.

[leeirons]

it really sounds like humans shouldn't be eating it at all.

Living is bad for your health.

The career choice of being self employed is not the best option.

Yeah, that's why I'm telling them to have two options on career paths. Sometimes big corporate layoffs force you into small-business / free-lance work.

I think it is important to get the diagnosis, but I understand the tightrope we walk in trying to ensure the insurability of our children.

[leeirons]

My daughter's endoscopy results came back.

Nothing but a ittle inflamation near the top of her esophagus, indicative of slight reflux. No Celiac sprue, no bad bacteria, no parasites, no strophic gastritis, or esophageal allergies. Have to wait till next week to get the results of the disacharidase levels. The doctor does not see a need to do any more testing.

So, all that we have to go on, still, is an IgA deficiency and a number of food allergies. I think it is time to do the stool testing for bacteria and parasites, and test for candida.

Any other ideas?

[Jestgar]

Just stop eating gluten and see if it helps.