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Coping With Kids' Gluten Accidents...


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21 replies to this topic

#16 kyss

 
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Posted 03 April 2004 - 12:33 PM

Mariann,

:) :) :)
Thank you for your reply. I have an appointment with a Pediatric GI Specialist on Wednesday for both my kids. I am dreading the blood draws, however I am dreading the biopsy for them even more. My mother says it isnt too bad. I have mine scheduled for 4/26/04, so I guess I will see how it goes. I just wonder if a biopsy is absolutely needed for my kids. I don't want to put them through something they don't absolutely need. I guess I will see on Monday what the GI doc says. Again thanks for your reply, I really appreciate it.l

Thanks,
Kelly
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#17 hsd1203

 
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Posted 03 April 2004 - 02:08 PM

Kelly (and others with GI suspect kids),

Not to make your life more complicated than it has to be, but thought I would pass along a related personal story just 'cause I hope it might help someone.

I was tested (biopsy) when I was 6 (some minor tummy troubles, really bad temper, never slept, etc. sound familiar?), and it was negative. So of course I and my family assumed I was out of the woods for good.

Until, that is, about 20 years later when I was finally so sick I couldn't see straight. I cried at absolutely everything, picked fights with my husband, couldn't remember anything I studied for school, thought life was horrible, had no energy, got hypoglycemic and super grumpy (and that's putting it politely) if I hadn't eaten in the last 5 minutes, etc, etc. Trouble is, in retrospect, these symptoms had probably been building for years (even with minimal GI trouble) but noone in my family, including me, really suspected celiac as the culprit, since I'd been negative before. Finally it sunk in that this might be ceilac anyway. A week into a gluten-free diet, I felt better. A few months into it, I literally feel like a new person, I am so much better able to function.

So, the moral of the story is... even if your kids test negative now, you don't have to watch them like a hawk, but please keep this somewhere in the back of your mind for the future.

Heather
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#18 kyss

 
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Posted 04 April 2004 - 09:34 AM

Heather,

That is so familiar that you have no idea. My youngest is a volcano ready to explode at any moment. She is actually on an anti seizure medication which does help with the rages alittle but the hyperactivity is awful. She gets a "pink slip" from school at least 1 x a week. But then again I feel so tired and upset that I usually loose it..so much for parenting skills. My husband hides in his office most of the time because my oldest and I argue horribly and my youngest is just into everything all the time. I guess I don't blame him I would hide to if I could.

But I have decided that after my biopsy since I am the cook I get to put everyone on the diet except my husband, and then if he wants stuff he better hide it away.

I bet had I been tested younger I would have been negative too, until I hit 21 and was pregnant with my oldest child. I had a difficult pregnancy to begin with; but then 2wks before I had her I broke out in a rash on my legs, after having her I then had the rash over 85% of my body and since then I haven't felt "right". The rash was blamed on an iodine allergy, however 6months later I was diagnosed with hypothyroidism. I felt better after starting the synthroid, but I still didn't feel well. My sister had the dermatitis and a skin biopsy was done she has absolutely no GI symptoms however my mom and I have had symptoms for over 11 years, and we were told it was all in our head. But believe me, I am not doctor bashing, I work for my children's pediatric practice doing referrals and office manager, I have talked with them for the last several months about this and they explain this is a difficult thing to diagnose because so many symptoms are similar to other things. I think though that when my AB IGA came back so high they have educated themselves and admit that it is possible there are more celiacs in their practice. One doctor said she has to prepare herself to help treat my children because she knows very little about the disease. I thank her for trying though and giving it a second look at other patients.

Okay now I have rambled too much! I get going on this and I just don't know when to stop, my mom says I should write a book, only problem is it is neverending.hahaha :D I actually have a positive outlook on this because an answer has been found! :D

Thanks for letting me rambling....
Kelly
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#19 seeking_wholeness

 
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Posted 05 April 2004 - 01:17 PM

Kelly, I seem to remember reading that if you have dermatitis herpetiformis, iodine will trigger a flare-up of the rash. Have you heard this?
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Sarah
gluten-free since November 1, 2003

#20 kyss

 
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Posted 06 April 2004 - 05:30 PM

Sarah,
:o
I am in shock right now....I was just told it was erethyma multiformus, in other words an unexplained rash. What I do now is for almost 12 years I have avoided seafood and fish like the plague because of a possible reaction to any trace of iodine in the fish. I wonder if I can eat fish again? I had gone to an allergy doctor for skin tests one time and had a reaction to crab and shrimp, but not to lobster, for right now I still think I will avoid it.

I had no idea that iodine would cause a flare up of dermatitis herpetiformis. I should relay this to my sister and mother so they are aware of this. Thank you so much for the information...I seem to be getting more and more from this forum each day......I really appreciate it.

Thanks Again :) :)
Kelly
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#21 Guest_aramgard_*

 
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Posted 07 April 2004 - 07:06 AM

Kelly, Also only buy plain salt to cook with. I have had the dermatitis since childhood and am now 70 years old. Iodized salt also affects the dermatitis. I love all kinds of fish and shellfish, but break out in giant hives when I eat any of it, including trout. I was hoping that after being gluten free for awhile I could eat seafood but now I'm really kind of afraid to try, since the rashes are beginning to subside after 3 years gluten free. Hope this info helps. Shirley
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#22 kyss

 
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Posted 07 April 2004 - 02:06 PM

Shirley,

Thank you for the information. I had stopped eating iodized salt because when I ate it my mouth would break out in the worst canker sores. I would then swish with salt (iodized) water and it would get worse. After I stopped using the iodized salt the canker sores aren't as severe. I still get them however, probably part of the celiac disease, my sister and youngest daughter get them too. You should see the hospital staff when I have to have any sort of betadine wash...they are in awe of the fact that I could be allergic to it....allergic or not...there won't be iodine, betadine or fish touching this body any time soon...

Kelly
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