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Electra

What Do I Do Now?

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Ok I'm sure my daughter has Celiac. Her stools indicate it and she has a rash consistant with DH. Right now she has a rash accross part of her nose and one cheek under her eye. It just won't go away. She's had it for almost two weeks and it gets worse on some days and better on others. She has tested negative with the blood test and the biopsy, but I'm 100% positive she has Celiac, so I need a diagnosis. She has been gluten free and things improve, but I can't seem to get a difinitive diagnosis. Her skin specialist does not recomment the skin biopsy in a 2 yr. old. She says it is very painful and it can be traumatizing. I just don't know what to do and I won't force her to go Gluten free if she does not have Celiac, so what should I do now? She barely eats any gluten as it is, but I'm just not sure if I should go ahead with the biopsy or maybe have the gene test next? Any suggestions?


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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If she does better without certain food whether it be casein, gluten, or honey why let her eat them just because she does not have a diagnosed problem with them? Something is making her react that way. Maybe she has a food intolerance. I personally would not have a problem making her eat gluten-free if it helped her even though she did not have a diagnosis. Good luck!

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Angie,

Keep reading these message boards and you will start to catch the vibe, that so many people here do not wait around for an official DX. Since celiac is not treated by medication, the advantge of having a DX from an MD is somewhat limited anyway.

If it makes you feel better why not, instead of saying "I'm embarking my child on a lifetime of gluten-free", look at it as an experiment. Try it for a week, a month. My son was markedly better within 2 days of being gluten-free. (He did not have skin issues, he was throwing up and had cramps. ). No gluten, no barf. It was pretty easy to decide. For us , having our son feel good and be healthy was the #1 priority..navigating aorund the medical community is ...details.

Hope she feels better. HEIDI

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Some people seem to have a good response going to Entero labs (sp?) especially when they can't get a diagnosis from blood and biopsy. You might want to look into this if you feel you really have to have diagnosis.



Have you had her allergy tested? Maybe she is allergic to something in addition to having the DH or skin rashes? My child (2yr old) ended up testing negative for Celiacs (positive gene though :( ) Turned out she has a milk allergy and we think a few more allergies. Remove the milk and no more bowel problems or other celiac looking problems. Slight amount of milk and the rash and diarrhea are back. Right now she is not gluten-free and finally healthy being milk free.

My point is just that you had her Celiac tested and she came back negative. Make sure you and the doctors look for all other sources of the problems before labeling her a Celiac. Get a gene test. Once you have checked off other illnesses etc, and if she still has the problems, then try her gluten-free again. If the symptoms go away, you have a celiac kid.

I would not worry about an getting official diagnosis. It can be very hard to get an official diagnosis on kids. If your daughter is healthy and growing well being gluten-free, then that is all the proof most of us need.

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Well I just called her dermatologist back and they want to see her today at 2:45 EST, so they can actually see the rash this time lol!! I've been putting eczema cream on it because my kids tend to have eczema, but it doesn't seem to be helping. I'm sure they are going to say that it's Eczema, but I'm not convinced because it doesn't present itself at times when Eczema normally does, so it doesn't quite make sence. I'm hoping they will be able to give us something to help treat it today. I'll let you know what happens.


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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BTW, if it is DH, not only should you remove gluten but also iodine while the rash is presenting itself. I was reading that on occasion you're supposed to remove iodine for up to two years to make sure the rash doesn't come back.

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Ok I'm sure my daughter has Celiac. Her stools indicate it and she has a rash consistant with DH. Right now she has a rash accross part of her nose and one cheek under her eye. It just won't go away. She's had it for almost two weeks and it gets worse on some days and better on others. She has tested negative with the blood test and the biopsy, but I'm 100% positive she has Celiac, so I need a diagnosis. She has been gluten free and things improve, but I can't seem to get a difinitive diagnosis. Her skin specialist does not recomment the skin biopsy in a 2 yr. old. She says it is very painful and it can be traumatizing. I just don't know what to do and I won't force her to go Gluten free if she does not have Celiac, so what should I do now? She barely eats any gluten as it is, but I'm just not sure if I should go ahead with the biopsy or maybe have the gene test next? Any suggestions?

My insurance covers the gene test 100% I wish I had done that instead of going about it different ways.... oh well we live... we learn :) (I didn't even know it was genetic... when I asked the Dr. told me "no" but it does run in families" *roll eyeS*

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Well they think the rash on her cheek and nose is due to the sun, but I disagree. Last year they thought it was sun too so we tried sunblock and it just stayed the same so then we eliminated all sunblock trying to get it to go away and that didn't make a difference either, so then we went back to sunblock, and it was still there. They have agreed that a biopsy is needed, but they need to have the other spots break out before they can do one. They also need to put her under anethesia, since she is only 2 they are afraid she will fight like mad and it will traumatize her for life. She does eat salt with iodine in it quite a bit, but no matter what I do I can't seem to get her to break out as badly as she originally did. For some reason she just will not break out in the full fledge rash again. She just gets a spot here and there now and I really would like to see the whole thing erupt again. I'm going to try not to give her anything but Gluten for a few weeks and see if that makes a difference. Hopefully I can get her to break out and then we can get this thing over with.


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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I highly suggest the genetic testing as well. Our insurance did not cover it, but some do. It cost us around $300. I think it is important to get an offical dignosis, that way if it is not Celiac, you can keep looking to figure out what is really causing the problems to occur.


Jen

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when does eczema normally present itself? i have atopic dermatitis, and it pops up just any old time it feels like it.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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I highly suggest the genetic testing as well. Our insurance did not cover it, but some do. It cost us around $300. I think it is important to get an offical dignosis, that way if it is not Celiac, you can keep looking to figure out what is really causing the problems to occur.

I don't agree that the genetic test will necessarily give you any information. Sure, if she has the genes that predispose one to celiac, that would be a probably answer, but what if she doesn't?

It is possible to LACK the genes that predispose one towards celiac, and still develop celiac.

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