Can Someone Explain Lab Tests Since Doctors Can't

[Boatswife]

I am so thankful to have found this board. I feel like I should have MD at the end of my name since it appears I know more than the several doctors we are seeing. My 5 year old has been sick since she was a baby. I recently asked for her to be tested for celiac and it came back positive (according to blood tests done by the base- husband is military). They referred us to a GI doctor. He wanted to retest and I asked for him to test for everything possible because we have seen so many specialists that my poor daughter has had her blood drawn 6 or 7 times in a matter of 3-4 months plus countless x-rays, ultrasounds, etc. During all of this, she was getting sick every 6 weeks (cold, cough, etc). So we were referred to an allergist. The allergist diagnosed her as having selective IgA deficiency.

The GI doctor that we see is at a great children's hospital and her records are online. When they enter her test results, I get an email so I have all of them even though we don't go back to the GI doctor until next week. We were at the pediatrician today because my daughter is sick again. According to the lab tests, her IgA levels are normal so I don't understand how she can have a deficiency. I asked if there were different IgA levels because I am confused. She told me she didn't know. I have had 3 different doctors (including GI)tell me if she has an IgA degiciency then we may not be able to get an accurate diagnosis on blood work alone- we'll have to do the biopsy.

Here are the levels we have so far.

RBC 3.84 Range 4.73-5.49

HGB 10.5 Range 11.5-15.5

HCT 31.2 Range 35.0-50.0

*From the research I've done- this shows she's anemic. That's not a big surprise to me since she's been anemic since 18 months old. But, I've read that anemia is a known factor/side effect with celiac disease.

CRP (C-Reactive Protein) <0.5 Range 0.0-1.0 (this was normal)

Reducing Substances- Stool was positive.

*I read this means she is lactose intolerant. (I've always thought she had some form of dairy allergy but one doctor had me do a 2 week elimination and when that didn't solve her stomach issues they just said it wasn't dairy)

IGA Immunoglobulin Assay <40 Range 33-235 (so this is normal)

Gliadin IGA <3 Range -<11 (so this is normal)

Gliadin IGG >100 Range -<11 (this was flagged)

The last test I can't figure out based on the spacing of the page. I'll try and type it just as it's listed.

TTG IGA <3 >5 U/mL

Reference Range:

<5 U/mL Negative

5-8 U/mL Equivocal

>8 U/mL Positive

TTG IGG >100 ABNORMAL <7 U/mL

Reference Range:

<7 U/mL Negative

7-10 U/mL Equivocal

>10 U/mL Positive

I guess this is saying her TTG IGA is normal but her TTG IGG is abnormal.

Can someone explain the difference in the IGA's to me? There were more tests done but those all came back normal (at least the ones that have been entered). Based on these tests, I feel fairy certain she has celiac disease. I want to know more about the lactose intolerance possible dairy allergy though. I am trying to research everything I can so I know exactly what to ask and I don't feel like the doctor is speaking a different language like I did the last time we were there.

If you have gotten this far- THANK YOU!

~Tiffany

[lemontree1]

Anemic- yes.

Gliadin is the antibody against gluten. There are two types.

TTG is an antibody against the stomach lining. Again- the two types. Children often don't make enough mature cells for this test to be positive.

Based on your description and the tests, it seems pretty obvious to me that your daughter is celiac. She should be off gluten and dairy- dairy is often a problem when the stomach needs to be healed. She should also have some sort of supplement to deal with the anemia. Her stomach isn't absorbing all the nutrients she needs right now. You should ask to have other vitamin and minerals checked- iron, vit D, B6, B12. They are often all low. Plus she may have intolerance to many different foods, commonly dairy, soy, and maybe others.

Children don't always have the total IgA very high. For some, their bodies just aren't mature enough to make it. I haven't heard of it being a problem, just that it would be the IgG antibodies they would look at.

[Skylark]

Hi there. Your daughter is IgA deficient and celiac. Your first clue to the IgA deficiency is the total IgA, which is not flagged, but it's low enough that they couldn't measure it accurately. The reference range is a red herring - putting the bottom at 33 when they apparently can't measure below 40 is nonsense and your doctors understand that when they read that result.

The second clue is results on the celiac panel. TTG and gliadin are looking for IgG and IgA that react with those particular antigens, and the presence of both indicates celiac disease in some stage of progression. Your daughter has low IgA results on both antibodies but extremely high IgG. That means her immune system is relying on IgG to recognize the celiac antigens and probably everything else.

The reducing substances is more of a malabsorption test. It measures sugars in general, not just lactose. It means sugars are going through her instead of being absorbed. The low red blood cells are a sign of anemia, which is caused by poor iron absorption in celiacs.

I'm sure they'll set up a biopsy, but even if her villi don't look too bad she should definitely go gluten-free after the testing is done with the high antibodies and malabsorption.

[Jestgar]

I second Sky's description AND her suggestion that your daughter be gluten-free after the testing is done.

[Boatswife]

I second Sky's description AND her suggestion that your daughter be gluten-free after the testing is done.

Thank you all so much! We plan to go back to eating gluten-free once all of the testing is done.

Regarding taking her off dairy- I'm sure the doctor will explain this more but I'd like to know what you all think- should it just be lactose or anything containing casein?

Also- what exactly will the biopsy show? I am very hesitant in putting her through that. If the biopsy is only used to diagnose celiac disease, do we really need to do it? I feel confident with the labs that she has celiac. If it will possibly show us other issues or diagnose other allergies then I'm open to it. She was also diagnosed with a heart condition over the summer. The doctors have all told me there would be no complications but I'm a Mom and of course I don't want to take any unnecessary risks.

We are also waiting on labs for my other daughter that has vitiligo. She was diagnosed with a gluten intolerance earlier in the summer so we're waiting to see what the labs show now.

[Skylark]

Doctors consider villous atrophy the "gold standard" for diagnosing celiac disease. Your doctor will look for ulcers and other visible GI problems with the scope. The endoscopy will show whether or not her celiac antibodies have caused villous damage and how bad it is. It provides a benchmark too, so if she keeps having trouble your doctor can repeat the endoscopy and see how far she has healed. With high antibodies and a big improvement off gluten, some parents do opt out of having the endoscopy done.

As far as milk, many celiacs do better off casein as well as lactose initially. Lactase is made at the tips of the villi so with celiac damage, there is no way to digest it. Celiac antibodies can cross-react with casein as well, giving symptoms from milk. Once she is doing better and her antibodies have fallen, you can try reintroducing dairy.