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How Do You Deal With Being Angry?


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21 replies to this topic

#16 dana_g

 
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Posted 10 June 2004 - 08:55 AM

By the way, the only symptom my daughter had was occasional cracks in the corners of her mouth--NO intestinal symptoms at all. Lisa, please call a pediatric gastrointestinal specialist if you have to in order to get the back up you need to get these tests!
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Gloriously gluten-free--Dana

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#17 angel_jd1

 
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Posted 10 June 2004 - 09:07 AM

FYI, in Italy, they test EVERY child at age six for celiac disease...none of this ignorant nonsense that goes on in the US.



All I have to say is AMEN!!! I sure wish they would do that here in the U.S. then we wouldn't see people suffering for 10,20,30, and 40 years with pain!! I remember reading that fact when I was first diagnosed and being astonished, hard to believe one country can be so ontop of it, and another has no clue what the disease is about!! <_<

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#18 lisa922

 
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Posted 10 June 2004 - 11:15 AM

Dana - I agree with you - I thought it was crazy that he said not to test them. I knew I would go back and ask, but I am glad I was able to gather some info first. I really am convinced that my brother's kids may not have been tested with complete work-up (he hasn't gotten copies of their stuff, just was told they were negative). I feel like mine will be getting the complete work-up and we won't have any false negatives. I meant to drop off the info for the doctor yesterday and forgot to bring it with me, so I think now that I'm thinking about it, I will print it and fax it! I'll let you know what happens. I think it is great that in Italy they automatically screen for it. I look at my youngest and see various gastro symptoms, but then I look at my oldest, and even though I don't see any gastro stuff, she had Kawasaki disease when she was just under 2 and she has keloids on her ears after her piercings got infected and would absolutely not clear up (this was even after she had had them pierced for 4 months and they had been fine). I know that Kawasaki is thought to have an autoimmune component to it, and I just thought about the other recently and was thinking I should look that up, too.

I just saw your other message - my older had the cracks in her mouth when she had the Kawasaki, and so did I!! I still maintain I had it also and they just missed it with me because they claim adults don't get it. I did call a Pediatric Gastro for back-up and mentioned his name in the letter to the Pediatrician, so one way or another they WILL be tested and I want it done soon so I can get them gluten-free. I cringe when they eat bread now!! Going to go print my letter!! Thanks for the back-up!!

LISA
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#19 lisa922

 
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Posted 10 June 2004 - 01:11 PM

Ok, everyone...what do I do now....I have read a lot about the blood tests and seen the recommendations by Prometheus Labs and Danna Korn's site that suggest having like 5 things done (IgA, IgG, tTg, EMA, and Total Serum IgA) and the HLADQ2 and HLADQ8 genetic tests. I faxed a letter to the pediatrician along with copies of the info from the websites. He is clearly willing to work with me, but I just don't know where to go from here. He said I could send them to the pediatric gastro doctor in Winston, but I kind of didn't want to jump the gun and do that right away, especially if they don't even have it. I know he doesn't feel like the girls have much in the way of symptoms, so I think he is surprised I want to test them, but I explained that I never had severe gastro symptoms (until 2003). I suppose in hindsight, I did have some gastro issues, but I never thought they warranted seeing a doctor about them. I've had more in the way of autoimmune stuff and I don't want them to get those problems. He asked me if they tested positive but don't have any gastro symptoms, would I still have them go gluten-free. I said, of course because of the other autoimmune diseases. I really think he is looking at it only from a gastro standpoint. He did call the gastro doctor who is an expert on Celiac, and the gastro doctor suggested only doing the IgA and tTg tests (even though his nurse told me about the genetic). So...what do I do...do I just get those two? I was negative on my tTg and only weakly positive on the IgA. I'm worried about a false negative, and feel like I'll be a worry-wart if I don't get the genetic stuff as well. The gastro dr strongly believes in the biopsy, too, if positive, but I didn't know if I wanted to do that with the kids. I could just go see the gastro dr first, but I'm anxious now to get the tests (It's been 7 weeks since I found out about me and so it hasn't been that long, but I'm afraid if I wait to see the gastro dr first, they won't get them in for another few months). Do I just start with those 2 tests and forget about the rest, or push for all of it and do I just use the lab here, or go for the gold and use Prometheus and have it mailed there? Can't wait to hear your suggestions!!! I know ultimately I have to decide, but I like hearing from those who have been there and done that. Thanks!!

LISA
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#20 kalo

 
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Posted 10 June 2004 - 02:12 PM

Do you know about enterolab? It is a non invasive stool test that is much more reliable than the blood test. Kind of expensive but worth it. Hugs, Carol B (who's waiting for her results from them)
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Hugs, Carol B Enterolab diagnosed gluten sensitive and casein allergic June 04

#21 lisa922

 
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Posted 10 June 2004 - 05:58 PM

Carol - Yes, I have heard of Enterolab, but I was hoping to have this covered through insurance and I figured the doctors would question the Enterolab results, so I'm using their methods for now. Thanks, anyway!!

LISA
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#22 lisa922

 
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Posted 13 June 2004 - 12:48 PM

Just wanted to let everyone know that I went ahead and ordered the kits from Prometheus Labs. I feel like I'll have regrets if I don't do the full panel of serology - especially since my tTG (and my Dad's) were both negative and I know the partial test my doctor was talking about relies heavily on tTG. I called both the hospital and a local lab and both said they would be willing to draw the blood (for a fee) and would then ship the samples to Prometheus. I am a little nervous about feeling like I'll need to stand over them to make sure the shipping is done correctly and am not sure yet how I will handle that, but I'll figure that out when I get the kits tomorrow and can read all the info in them. I think the pediatrician was surprised at a lot of the info I gave him. At one point, he asked if I'd still make them gluten-free with positive bloodwork if they didn't have any gastro symptoms and I said, OF COURSE!!! The doctor's need to get a new definition of Celiac so they'll stop thinking gastro symptoms are the only concern. I'll post in a few weeks when I find out their results. Thanks, again

LISA
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