Am I Correct/want To Be Knowledgeable When I See Specialist...

[brookeadrienne]

Hi All,

Please accept my apologies for this being a novel but I would really appreciate any and all advice or comments!

 

I have three kids, I posted about one of them once before.  I just received all the kids' blood work back and am wanting to make sure I am understanding it correctly.  I also want to make sure I am not slided by the docs again and know what questions to ask or at least be knowledgeable about the blood work that has been done.  I don't know if I should push for a biopsy based off of these test results either.  My understanding is that a low or deficient IGA coupled with a high IGG is probably celiac?!  But what constitutes low or deficient?

 

Child #2 (child with longest, chronic, issues)

Latest blood work shows:

Gliadin IGA 1.0

Gliadin IGG 31.0 (Test says: negative <7, equivocal 7-10, positive >10)

TTG IGA 0.1

TTG IGG <0.6

 

2 years ago her bloodwork (vague and not as complete) showed:

IGA 42

Gliadin <3

Gliadin IGG 11

TTG IGA <3

 

Any thoughts on why her Gliadin IGG would go from 11 to 31?!  Two years ago she would have been only one year old so not eating as much food as she obviously does now.  That's all I can think of.  Am I appropriately concerned about this?  This is the child that at about 14 months old had a strange episode where she was playing then suddenly went stiff/rigid, cried a noticeably painful, inconsolable cry, fell limp into my arms and lost consciousness.  While on the phone with 911 she finally regained consciousness.  All tests showed no heart condition, no seizure and no hirshprungs.  Ultrasounds showed gallstones which were later dismissed as technician reader error.  Xray showed her digestive system back up so doc just said she passed out from trying to pass a bm...despite the fact that she never cried or had issues passing a bowel movement and every finger check revealed soft bms.  She has always been sporadic with her bms, even as a baby; they are usually thick like playdough or very sticky, making it difficult to get out, even now at 3 years old.  She was also a very gassy baby; could never get her to burp.  Would go like 3 days between bms as a baby and even now.  GI says just to take Miralax.  The dosage they gave her two years ago now no longer does anything and their answer is to just keep upping the dosage!  She continues to have frequent episodes ranging from tummy pain after eating to full out constipation with screaming and crying.  We have had to use suppositories and enemas more than we have ever thought or wanted to on one of our children.  She never has had hard little pellets for a bm.  Just at Christmas we thought we were going to have to go back to the ER because she was acting as if she was going to pass out again  Pediatric Surgeon in NC said she would scope her to see what was going on but Army called us to move.  Now we are in Kansas for just a year (actually only have 6 months left) before we have to start all over somewhere else.

 

Child #1

Latest blood work shows:

ALK PHOS 224 (50-136 is the range they have listed if I am reading it correctly)

Gliadin IGA 0.8

Gliadin IGG 43

TTG IGA 2.7

TTG IGG 3.2

 

This child had extreme GERD as a baby.  Never any issues with constipation.  Recently has complained she needs to pee all the time.  Several test results show no infection.  Doc prescribed a bladder spasm medication and Nexium for reflux (which she can't swallow).  She also now complains her stomach hurts every day.  Another strange thing, not sure if it relates, she scratches everywhere all the time...weird

 

Child #3 (only 6 months old and breastfeeding)

Latest blood work shows:

Gliadin IGA <0.2

Gliadin IGG 1.3

TTG IGA <0.1

TTG IGG <0.6

 

The baby was tested because he is just like child #2 (when she was a baby).  Always extremely gassy, won't burp, wakes with painful crying from tummy pain often.  Gas drops don't seem to help.  Gripe water relieves a little at times.  Since I am breastfeeding I have cut out all "gassy" foods, milk and sodas.  (I don't drink coffee)  Doctor says his results were probably not true results because he is breastfeeding?!

 

Any thoughts?  Any at all??!!  I am just so discouraged and don't know what to do.  I am so tired of watching child #2 in so much pain.  Pediatrician and GI nurse say not to start gluten free diet yet until they decide if more tests should be run.  I just want to be armed with information when I go in!  Thank you for any help!

[nvsmom]

I think I've given you the link to the World Gastroenterology Celiac Report before, but if I haven't her it is again. It's a good report to print and give to the doctor, and to get info from. Open Original Shared Link

 

On page 12 it shows that the AGA IIgG is 85-95% specific to celiac disease, so 5-15% of positives are caused by something other than celiac disease.  Some doctors believe that the AGA can indicate non-celiac gluten intolerance (NCGI) as well as celiac disease but this is not widely accepted. Your child may have had the which is DGP IgG test whish is 99-100% specific to celiac disease, meaning that out of 100 positive tests, 99-100 of them are caused by celiac disease.  It's the most specific test for celiac disease out there, and it is the best one for detecting celiac disease in children. 

 

In my eyes, a positive DGP IgG indicates celiac disease and the AGA IgG mostlikely indicates celiac disease as well. Some doctors will be fine diagnosing with that test result but many won't be. The doctor may want to do an endoscopy so they can see the villi damage with their own eyes. If you have this done, request that at least six biopsies be taken - more is better. Your little one will have to be eating gluten in the two weeks prior to the procedure.; some doctors want four weeks or more for better accuracy. They will often rush a young child through faster so they don't have to be on gluten and suffering longer than absolutely needed. If there is a long wait until the procedure you could stop and restart consuming gluten, but a gluten challenge is a shock to the system after going gluten-free for some.

 

Be aware that a minority of celiacs will have negative biopsies for various reasons. With positive celiac disease tests, you should probably implement the gluten-free diet regardless of the biopsy outcome.

 

If you are having more blood tests, make sure to get the DGP (deaminated gliadin peptides) tests as I think yours were the AGA. The DGP tests are great tests for kids. You could also request the EMA IgA but that one is very similar to the tTG IgA but is positive when damage is fairly advanced. Someone with a negative tTG IgA will probably have a negative EMA IgA. Also, if one is deficient in Immunoglobulin A (IgA), those tests will not be accurate.

 

Good luck with the doctor!