Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My 6 Yo's Test Results

kittywitty

Recommended Posts

kittywitty Newbie
kittywitty
Posted

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 Open Original Shared Linkthe 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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


sb2178 Enthusiast
sb2178
Posted

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.

kittywitty Newbie
kittywitty
Posted
  • Author

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!

mushroom Proficient
mushroom
Posted

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?

ddennis11 Newbie
ddennis11
Posted

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?

kittywitty Newbie
kittywitty
Posted
  • Author

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

Marlie Apprentice
Marlie
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.