parent of child with Celiac

michellerkazee · Joined: 04 Feb 2008 Posts: 2 Location: Palm Bay, FL

Hi everyone! This has been a fantastic forum and I am so blessed to have access to it...thanks!
My 12 yr old daughter has been very sick for over 3 months and I took her to the ER last week and they think she has Celiac. We get her blood results in 2 days. One doctor saw the itchy, blistery rash on her backside and came to the conclusion it was DH. I have lots of questions, but mostly just wonder if we all (family of 6) should be tested or just go gluten free with her. Thanks for any advice/comments!
Michelle
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"Let us hold unswervingly to the hope we profess, for he who promised is faithful." Hebrews 10:23

cruelshoes · Joined: 23 Sep 2005 Posts: 2686 Location: Washington State

Hi, michellerkazee. Sorry your daughter has been ill. DH is the skin manifestation of celiac disease, as you already know. All first degree relatives of celiacs/persons with DH should be screened regardless of whether or not they are showing symptoms. General population chances of having it are roughtly 1:133. When you have a first degree relative, the chances increase to somewhere in the neighborhood of 1:22 - even higher if there are other autoimmine diseases present (diabetes, Hashimotos, etc). When I was diagnosed, we had both my kids screened as my first degree relatives. My son was overwhelmingly positive on both bloodwork and biopsy with NO discernable symptoms.

A few things to know - If she does have DH, she may not show up as positive on the bloodwork. DH is generally diagnosed by doing a skin biopsy. Did they biopsy it in the ER? Secondly, don't remove gluten from her diet until the testing is complete. Once you remove gluten, she will begin to heal and you may get a negative result even if she actually has it.

There are a few of us on the board with kids. It will never be easy, but with a little work, they can live mostly normal lives. I hope to hear more from you as you get to the bottom of whatever is bothering your daughter.
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-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

michellerkazee · Joined: 04 Feb 2008 Posts: 2 Location: Palm Bay, FL

No, they did not do a biopsy. They were more concerned with her bowel/vomiting issues. I believe they were looking at gallbladder, appendicitis and ulceritive colitis until they saw the blisters on her backside. She hasn't been able to keep a meal down for a while....exiting one end or the other almost immediately upon eating. She has constant stomach pains in upper abdomen, bad acid reflux, pain in her back, very tired all the time, moody, and very depressed...putting herself to bed many evenings at 6pm or so. Her bahavior had changed a lot over the past year but everyone told me it was hormones and her age.
She had an upper GI done in Dec and it showed multiple ulcers in her stomach and her regular pediatrician diagnosed her with irritable bowel.
The doctor that thought it was DH called a pediatric GI (I chose to take her to an all children's hospital) and the specialist actually ordered the tests for her over the phone. The doctor we saw wasn't even familiar (he told us) with the tests he had to get for my daughter and needed to look them up. So, now we wait and wonder...
I haven't changed anything in her diet yet, as I read many posts on here and took other's advice to wait until I was told to. I must admit though, this is very overwhelming! But I am ready for her to feel better and come back to life! I miss my precious child! This "thing" has taken much of her away from us! Thank you for your kindness and helpfulness!
Bless you,
Michelle
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"Let us hold unswervingly to the hope we profess, for he who promised is faithful." Hebrews 10:23

ostrich · Joined: 30 Mar 2006 Posts: 4294 Location: Nebraska

Hey there Michellerkazee! Welcome to the forums, though I'm very sorry about what's happening to your daughter. I don't have much time, so I'm happy Colleen covered everything. *applause*

If anything, I'm happy the docs are trying to dig further to find the cause. Some docs diagnosis you with IBS and call it good.

Again, I'm really sorry this is happening to your family. I guess it's better to find out when she's 12 versus when she's 32. Please let us know if you have any more questions.
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Ostrich :>--O==={

Did you think that your feet had been bound
By what gravity brings to the ground?

cruelshoes · Joined: 23 Sep 2005 Posts: 2686 Location: Washington State