How to advocate

[beyondfrustrated]

Hello, 

I am the mother of a 2.5 year old that was recently hospitalized with high liver enzymes and CK. They did an IgA for celiacs, but it was low 27 with normal range being (33-198) and it looks like IgG and IgM that were both negative. She has no other symptoms, except for large (seriously, man sized) stool, some minor enamel issues with her teeth, and little rash patches here and there. She also has marginally low carnitine. 

I am confirmed allergic to wheat, barley, and rye, and was also found to negative fore celiac with the blood test. So, out home is gluten free, but not un-contaminated. 

Right now, we are in the process for genetic testing for Duchenne Muscular Dystrophy and carnitine defiency. 

She goes to a daycare that will allow home brought meals, but needs a doctor's note. I emailed her ped to ask, and he said going gluten-free wont do any good, because she doesn't have celiacs. Because of the negative blood test, the probability of celiacs is too low for it to be worth trying a gluten-free diet. 

No one will biopsy because celiac has be ruled out. I don't think it has. I want to try gluten-free with her and retest CK and liver enzymes in a few months. If they have decreased, I feel that it is a reason to more heavily pursue celiacs. 

But I don't know. Can anyone help? thanks

[cyclinglady]

Welcome!  

Exactly what celiac antibody tests were given?  Just the TTG?  Toddlers often test better on the DGP celiac test.  Her IgA might indicate a deficiency, but for celiac testing i think it is enough to validate any IgA antibody testing.  Ask for a complete celiac panel (both IgA and IgG) befor you rule out celiac disease (same goes for you, but the tests will not work if you are already gluten free!)

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[beyondfrustrated]

Thanks  she isn't gluten free at daycare, but certainly gluten light. I mentioned this to the gi, and he said any amount of gluten would mean she would test positive. OK. 

I am looking at the doctors notes and it looks like she was tested for... EBV VCA IgM anitbody serum and IgG AB and were negative. 

Is a wheat allergy correlated with celiacs at all? I had the blood test, and have been told that wheat allergic cant be celiacs.

[squirmingitch]

One can have have celiac disease AND also be allergic to wheat. Whoever told you that people who are allergic to wheat can not also be celiac is nuts!

[cyclinglady]

4 hours ago, beyondfrustrated said:

Thanks  she isn't gluten free at daycare, but certainly gluten light. I mentioned this to the gi, and he said any amount of gluten would mean she would test positive. OK. 

I am looking at the doctors notes and it looks like she was tested for... EBV VCA IgM anitbody serum and IgG AB and were negative. 

Is a wheat allergy correlated with celiacs at all? I had the blood test, and have been told that wheat allergic cant be celiacs.

Those two tests are NOT related to celiac disease.  One is for Epstein Barr (Mono) and the other i am not sure.  Are you sure you have all the test results?  You should maintain records for your entire family for life.  

A wheat allergy is different from celiac disease.  Celiac disease is an autoimmune disorder  (AI) like lupus, MS, R. arthritis, thyroiditis or Type 1 diabetes.   Each AI can flare up when the body starts attacking itself.  For celiac disease, the body attacks the small intestine.  The nice thing is we know that for a celiac disease flare-up "attack" the trigger is gluten.  No gluten for a celiac = happy body.  You have to ingest gluten for this to occur.  A small amount of gluten can cause a flare that can last for weeks or months, long after the gluten has left the body.  

Allergy symptoms typically effect the nose (runny), breathing, skin (hives, rashes, swelling), GI issues (as the body tries to get rid of the offending item), drop in blood pressure, passing out, etc.  Severe allergies require an epi pen.