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kittywitty

My 6 Yo's Test Results

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I'm trying to get a decent idea of what's going on and a list of questions to bring to the pediatric endocrinologist on monday. More than anything I want to know the most that I can about her results so I know what the doctor is talking about and really, just what's going on after many disappointing visits with other doctors.

My 6 year old is tiny. For years now we've been run round with doctors who brush off our concerns or tell us we're over-reacting. Well, our new doctor actually listened to us and ordered a bunch of tests. With a tsh of over 617 and a bone age scan of 3.5 years old, we were referred to an endo. The first endo she said was hysterical over her results and the second (the one we're going to) wants us in there ASAP and called back to get us in sooner. For a little back history, she had horrible allergies to tons of things as a baby-mostly dairy and had horrible reactions at the tiniest amount. We thought maybe dairy allergy still (manifesting differently than the bleeding hives and gratuitous vomiting as a baby) or Celiacs as she has almost every single Celiac's symptom. Stomach pain, no appetite, lots of body hair, below the scale height/weight, vomiting, constipation or diarrhea at any given moment, almost no immune system, etc. Her dad is type 1 diabetic and my mother has thyroid cancer. Both think they may have Celiacs. My 3 yo is starting to develop some of the same issues as my 6 yo.

The doc ran an Anti Gliaden Panel IgA & IgG (not Elisa or ttg) and this is the result:

IGG: over 100 (doctor considered this normal though positive is over 17)

IGA: 5 (Negative)

Here are the other abnormal results:

UA: Many crystals in her urine and leukocytes. We're on our second UA and second round of abx for this

Free T4: .4 L

TSH: 617.47 H

Creatinine: .5 L

GFR: 213 H (though irrelevant for her age group?)

RBC: 3.89 L

Hemoglobin: 12 (borderline low)

Hematocrit: 35 L

MCH: 31 (borderline high)

BA% .5 (borderline high)

Gran % 42.2 (borderline low)

Ly# (lymphocytes?) 3.5 H

So far we're going to request a ttg/Elisa test and biopsy for Celiac's. I read that anything over 3 times the positive number for IgG warrants furthur investigation and points to GI autoimmune issues so I feel this should be followed up on. Is this the right step to take? Would we need a ped. gastroenterologist to be referred to? Our pediatrician said going gluten free would be a good thing to do (she is a stage 4 colon cancer survivor herself) but she is hesitant to do further testing because of the invasiveness. I read this studythe other day and it makes sense. Because honestly, at the moment they're worried about thyroid cancer as her thyroid seems to be entirely shut down. Even Celiacs is the best case scenario.

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Get her tested for ferritin and b12 levels, as that anemia may be B12 deficiency w/ or w/o iron deficiency. I haven't heard of iodine malabsorption, but maybe ask about that as well...? Plenty of celiac do have issues with the +2 minerals like iron, calcium, magnesium, and zinc.

Did anyone test for total IgA? She might be IgA deficient, making the IgG result VERY VERY valid. At that level, it should be considered even if it is less strongly tied to a celiac diagnosis. Something there is wrong. Getting the rest of the celiac panel would also be wise, especially if the new doc would diagnose based on bloods and diet response. (On the other hand, there are sensible reasons for doing the biopsies too.)

At the end of the day, whatever else you are looking for, taking her gluten free may be a great idea. You don't need anyone's permission to do that. At least you'll see what happens in terms of clearing up some of those symptoms! Good luck.


2/2010 Malabsorption becomes dramatically noticable

3/2010 Negative IgA EMA; negative IgA TTG

4/2010 Negative biopsy

5/2010 Elimination diet; symptoms begin to resolve on gluten-free diet round two (10 days)

5/2010 Diagnosed gluten sensitive based on weakly positive repeat IgA & IgG TTGs and dietary response; decline capsule endoscopy.

Now, what to do about my cookbook in progress? Make it gluten-free?

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Get her tested for ferritin and b12 levels, as that anemia may be B12 deficiency w/ or w/o iron deficiency. I haven't heard of iodine malabsorption, but maybe ask about that as well...? Plenty of celiac do have issues with the +2 minerals like iron, calcium, magnesium, and zinc.

Did anyone test for total IgA? She might be IgA deficient, making the IgG result VERY VERY valid. At that level, it should be considered even if it is less strongly tied to a celiac diagnosis. Something there is wrong. Getting the rest of the celiac panel would also be wise, especially if the new doc would diagnose based on bloods and diet response. (On the other hand, there are sensible reasons for doing the biopsies too.)

At the end of the day, whatever else you are looking for, taking her gluten free may be a great idea. You don't need anyone's permission to do that. At least you'll see what happens in terms of clearing up some of those symptoms! Good luck.

Her ferritin level was normal, but they did not test B12. I'll put that on my list to ask for. The test does not look to be ttg-just generic Anti-gliaden it said. I'm more worried about going gluten free and then later tests being altered by it. She had skin prick test done at age 1.5 and it was all normal, though the allergist said it must've been false negative as she obviously was reacting. Her dairy allergy was pretty severe. So at least we're used to restricted diets! lol

Does the total IgA go by a specific name? All I know is it just said the IgA was 5 and 11-17 is equivocal and 17+ is positive. I have heard about IgA deficiency but do not know what level it would have to be for that to be taken into consideration. I saw something that indicated high basophils indicates allergic response, so that would make sense. But the doc said since her iron and ferritin levels were normal she is not anemic, even though her RBC, hemoglobin, and hematocrit were low. I am so confused!

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The IGA is called total serum IGA, and as I recall the normal range is something like 64-360 (just plucking those numbers from very old brain cells!), so anything in the 50's range for this test would be considered low and she would be considered not a normal maker of IGA antibodies, which would invalidate all IGA testing. Which celiac testing did they do? Can you provide us with the total tests, results and ranges?


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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The IGA is called total serum IGA, and as I recall the normal range is something like 64-360 (just plucking those numbers from very old brain cells!), so anything in the 50's range for this test would be considered low and she would be considered not a normal maker of IGA antibodies, which would invalidate all IGA testing. Which celiac testing did they do? Can you provide us with the total tests, results and ranges?

Was wondering about the response regarding serum IGA and antibodies. My 12 year old serum IGA (or immunglobin IGA (same thing right?) was 30, tested negative on panel but her gladin anti-bodies 60 which was high. Her Absolute Eosinophils were almost 2000 just fyi. My impression from what I have read is that the low immunglobin IGA can make the panels falsely negative. That is what you are saying right? But it would not effect the anti-bodies test. Just out of curiosity does the very high absolute esinophils have any meaning?

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The IGA is called total serum IGA, and as I recall the normal range is something like 64-360 (just plucking those numbers from very old brain cells!), so anything in the 50's range for this test would be considered low and she would be considered not a normal maker of IGA antibodies, which would invalidate all IGA testing. Which celiac testing did they do? Can you provide us with the total tests, results and ranges?

All it said on the print out (I got a copy from the hospital before we go to the endocrinologist) besides patient info like birthday:

Anti gliaden panel IGA & IGG

Gliadin Antibody (IGG) >100 (Flag)H

reference range:

<11 U/mL negative

11-17 equivocal

>17 positive

Gliadin Antibody (IGA) 5

reference range is the same as IGG

Test performed at Quest Diagnostics/Chantilly

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Was wondering about the response regarding serum IGA and antibodies. My 12 year old serum IGA (or immunglobin IGA (same thing right?) was 30, tested negative on panel but her gladin anti-bodies 60 which was high. Her Absolute Eosinophils were almost 2000 just fyi. My impression from what I have read is that the low immunglobin IGA can make the panels falsely negative. That is what you are saying right? But it would not effect the anti-bodies test. Just out of curiosity does the very high absolute esinophils have any meaning?

Eosinophils : The Mayo Clinic has a good explanation of Eosinophils. It can mean many things like allergic reaction, parasites, autoimmune diseases and some other conditions.

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