Creatine
A full metabolic panel - albumin, prealbumin, creatine, and a few others. It shows how the body is absorbing nutrients, creatine is specific to muscle wasting as in the body is not absorbing food and uses it's own muscle for fuel. I have forgotten if that is a H or L level that indicates that.
I believe the others in the panel might be iron, vit K and vit D -- which my son was fine on all 3, but the other tests showed he was starving to death.
I didn't learn all this over night. IT took some months. It also took my posting his results on braintalk and having other moms who have btdt take a look and advise me what to go search.
But Creatine freaked me out the most. It was the most telling tests I have in my hands aside from the CD panel which points toward CD.
I think the point at which I began my last hope searching was when I took a photo of my then 3 yr old and 1 yr old in the bath tub, she was so healthy looking and he was emaciated. It was very clear at that point he was sick and I needed to find the answers.
I happened to be in a new pedis office for my dd, who needed eye surgery. I had to take them all w me for her pre op appt. The doc noticed ds2 and he was banging his head on the wall. I told her some of what was going on and she asked if I would bring him back with his records, I did and she looked everything over, listened to me and said either CF or CD. We did the CD tests first and they came back negative. She was really stumped.
What she didn't know was that I was learning he needed a complete panel. And the more I read the more I knew this was it. So I took him to a Pedi GI, who did the complete panel and the 2 docs together ordered the metabolic work ups, the vitamin work ups, etc. It was 2 1/2 months from the time Pedi said CD, to the time we actually got the right tests done. Turns out ds2 is IGA deficient which skews all the Celiac tests but 1 (then, there are 2 on the IGG now). Pedi would have no reason to know this fluke. The IGA total serum test is dependent on the lab that does it. DS2's levels were so low they could not registar an IGA based CD test, but on that first lab his levels appeared normal.
He was already DF and GF changed his life within a week. The way it all happened was so "fate" like.
The only reason this doc had CD on her radar is that she has a patient whos parent is Celiac and the patient is GF due to symptoms alone, no testing. If it were not for that, this new pedi might have missed it too.
I think trying an elimination diet might be helpful at this point. I was just about to do one when the Pedi said CD. She saved me the trouble. It's hard, but I don't see any other way to know if it is a food or something else.
A full metabolic panel - albumin, prealbumin, creatine, and a few others. It shows how the body is absorbing nutrients, creatine is specific to muscle wasting as in the body is not absorbing food and uses it's own muscle for fuel. I have forgotten if that is a H or L level that indicates that.
I believe the others in the panel might be iron, vit K and vit D -- which my son was fine on all 3, but the other tests showed he was starving to death.
I didn't learn all this over night. IT took some months. It also took my posting his results on braintalk and having other moms who have btdt take a look and advise me what to go search.
But Creatine freaked me out the most. It was the most telling tests I have in my hands aside from the CD panel which points toward CD.
I think the point at which I began my last hope searching was when I took a photo of my then 3 yr old and 1 yr old in the bath tub, she was so healthy looking and he was emaciated. It was very clear at that point he was sick and I needed to find the answers.
I happened to be in a new pedis office for my dd, who needed eye surgery. I had to take them all w me for her pre op appt. The doc noticed ds2 and he was banging his head on the wall. I told her some of what was going on and she asked if I would bring him back with his records, I did and she looked everything over, listened to me and said either CF or CD. We did the CD tests first and they came back negative. She was really stumped.
What she didn't know was that I was learning he needed a complete panel. And the more I read the more I knew this was it. So I took him to a Pedi GI, who did the complete panel and the 2 docs together ordered the metabolic work ups, the vitamin work ups, etc. It was 2 1/2 months from the time Pedi said CD, to the time we actually got the right tests done. Turns out ds2 is IGA deficient which skews all the Celiac tests but 1 (then, there are 2 on the IGG now). Pedi would have no reason to know this fluke. The IGA total serum test is dependent on the lab that does it. DS2's levels were so low they could not registar an IGA based CD test, but on that first lab his levels appeared normal.
He was already DF and GF changed his life within a week. The way it all happened was so "fate" like.
The only reason this doc had CD on her radar is that she has a patient whos parent is Celiac and the patient is GF due to symptoms alone, no testing. If it were not for that, this new pedi might have missed it too.
I think trying an elimination diet might be helpful at this point. I was just about to do one when the Pedi said CD. She saved me the trouble. It's hard, but I don't see any other way to know if it is a food or something else.
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