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Slow Healing? Or On The Wrong Track?


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#1 October3

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Posted 03 October 2012 - 01:05 PM

My almost 8 yr old has been gluten free since February this time. We've been on this journey to figure out why he is chronically anemic for most of his life. Here's what we know:
1. Without iron supplements he is anemic
2. His diet is fairly rich in iron containing foods
3. He has a mildly elevated TTG when eating gluten, and it drops when he doesn't eat gluten
4. His scope is considered normal and only a doctor with a very high level of experience in celiac disease can find anything wrong at all, and even that isn't enough to confirm celiac - only mild changes.
5. He does not react obviously to gluten in any way.

Over the past 8 months we have stuck to a fairly strict gluten-free diet - its been hard because when we go out to eat or eat at someone else's home, or even at our home (because no one else is gluten-free at this point and so CC is obviously a concern although we try to be careful) we have no feedback on if we're "doing it right". He doesn't react either way. But I believe he is pretty strictly gluten-free with only the occassional very slight CC exposures possibly. We've also been supplementing with iron to get his levels back to normal. In June he was normal with all his blood work so we cut back from twice a day to once daily iron. In September he had dropped again. Sigh. We were so hopeful that being gluten-free would fix the malabsorption issue but it seems to still be there. I don't know if we're totally on the wrong track - only sticking with celiac disease as the culpruit because of the TTG, or if we just need to give it more time, or what. How long is long enough to know what we're doing is the right thing?

I should add that it is incredibly difficult to convince him that being gluten-free is worth all of the negatives that he sees because he doesn't feel bad when he eats gluten at all. Lately he's actually been trying to convince me he feels BETTER when he eats gluten. I haven't told him yet about needing to increase iron again but I'm sure his point will be "if the diet isn't helping the iron why am I doing it". What do I tell him?
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#2 bartfull

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Posted 03 October 2012 - 02:45 PM

That is a tough one. I was the same way when I was a child. My iron was so low they kept me on supplements for years. (The iron supplements discolored my teeth by the way. My baby teeth were white but when my adult teeth came in they were extremely yellow. I don't know if they have a different formula for it now, but you might ask his doctor about it.)

I can't remember and probably wasn't told much about it because I was so small, but I think I was about ten when I didn't have to take the iron anymore. Actually, I never knew what it was. They told me it was "medicine to make me hungry." I was terribly underweight and as long as I had to take this stuff they figured they might as well test the placebo effect while they were at it, to get me to eat more. It was a liquid, I remember that, and it tasted horrible.

I do remember that I craved eggs as a child. I wanted eggs at every meal. Even in restaurants all I ever asked for were soft boiled eggs.

I wish I knew or could remember more. I was one of those RH babies in the days before they had shots for it. Both my mother and I almost died when I was born. I also had pneumonia several times during infancy. I don't know if that is why my iron was so low or if it was something else.

I wish I could be of more help.
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Nightshades now seem to bother me too.

 

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#3 frieze

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Posted 04 October 2012 - 09:28 AM

My almost 8 yr old has been gluten free since February this time. We've been on this journey to figure out why he is chronically anemic for most of his life. Here's what we know:
1. Without iron supplements he is anemic
2. His diet is fairly rich in iron containing foods
3. He has a mildly elevated TTG when eating gluten, and it drops when he doesn't eat gluten
4. His scope is considered normal and only a doctor with a very high level of experience in celiac disease can find anything wrong at all, and even that isn't enough to confirm celiac - only mild changes.
5. He does not react obviously to gluten in any way.

Over the past 8 months we have stuck to a fairly strict gluten-free diet - its been hard because when we go out to eat or eat at someone else's home, or even at our home (because no one else is gluten-free at this point and so CC is obviously a concern although we try to be careful) we have no feedback on if we're "doing it right". He doesn't react either way. But I believe he is pretty strictly gluten-free with only the occassional very slight CC exposures possibly. We've also been supplementing with iron to get his levels back to normal. In June he was normal with all his blood work so we cut back from twice a day to once daily iron. In September he had dropped again. Sigh. We were so hopeful that being gluten-free would fix the malabsorption issue but it seems to still be there. I don't know if we're totally on the wrong track - only sticking with celiac disease as the culpruit because of the TTG, or if we just need to give it more time, or what. How long is long enough to know what we're doing is the right thing?

I should add that it is incredibly difficult to convince him that being gluten-free is worth all of the negatives that he sees because he doesn't feel bad when he eats gluten at all. Lately he's actually been trying to convince me he feels BETTER when he eats gluten. I haven't told him yet about needing to increase iron again but I'm sure his point will be "if the diet isn't helping the iron why am I doing it". What do I tell him?

Is he on acid blocking meds? If so, that can deter iron absorbtion. Also check for B12 def. Post his CBC. If his MCV is high it would lend support for a B12 def. Try giving the iron with vitamin C. good luck.
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#4 October3

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Posted 06 October 2012 - 11:04 AM

Is he on acid blocking meds? If so, that can deter iron absorbtion. Also check for B12 def. Post his CBC. If his MCV is high it would lend support for a B12 def. Try giving the iron with vitamin C. good luck.


Hi there. Thanks! No acid blocking meds. I'll try to dig up his blook work soon. We generally give his iron with fruit juice high in Vit C. He does absorb the supplements, just can't maintain if we try to wean him off. We'd all like him to be off supplements at some point and I thought the gluten-free diet was the answer but not so sure now.
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