Children with Celiac Disease

[CrunchyChristianMama]

Anyone else have a child with Celiac?  I would love to have some other parents of Celiacs to chat with!  My 2-year-old was just diagnosed and we are in the process of making our home GF.

We're struggling right now to figure out what all her symptoms of exposure are.  She has some obvious ones with a bad rash and bloated belly, but we think vomitting may be an issue as well as she has had what appears to be the stomach flu three times since Thanksgiving.  Two of them were when we were staying at my parent's gluten-filled home.

[scsigrl]

Here :)

My DS is/has been asymptomatic for the most part.  We do still have some issues we are working on in the BM department. Even after we went GF we were still having issues till we started with a probiotic. We are dealing with something now and I am trying to figure out what went wrong.  I changed to many things at one (and I should know better!!! I really should!).

Do you have any other food allergy/issues?

[CrunchyChristianMama]

She's also sensitive to sunflower (and sunflower oil is in, oh, everything!). 

Did you do the biopsy?  That's the only thing we haven't done with DD.  The problem is, celiac because the diagnosis after we had her off of gluten and now when she gets any she has a very strong horrible reaction.  So to put her on a gluten diet for 6 weeks is just out of the question right now.  We see a naturopath right now and she is satisfied with symptoms + no actual allergy to gluten + having the gene = Celiac. 

[scsigrl]

We did do the biopsy.  I was inconclusive :(  Went off gluten and his ttG went from 200+ down to 49!!  Still not "normal" but getting there.  We decided on the biopsy because I was unwilling to think that with all DSs other allergies that he had Celiac's on top of it. Not that the biopsy helped us anyway ;)

Did you have any Celiac's testing?  I would think a ttG would be minimally necessary for a Celiac's dx especially since 80%+ people have the gene so that isn't a real indicator.  It's great that your little one is feeling better but I would think it could be an intolerance if there was no other blood work to support a Celiac's dx.

[Panserbjorne]

no biopsy here.  We did IgA, IgG, TTG, genetic testing and she was dx based on clinical findings.  I refused the biopsy and the MD was in agreement.  She was so fragile when she was first dx'd.

I did a blood test (positive) and dh did blood and saliva (both positive.)

So, our house is GF...the other kiddos weren't tested, but given that dd, dh and I were all dx'd, that ds1 was IgG positive to gluten and reactive to it we don't feel the need to go further.  Ds2 was never exposed, in utero or through breastmilk, and won't be anytime soon.  He's 4 now.

[CrunchyChristianMama]

I was chatting on a celiac message board and someone recommended that I could have her rash biopsied if I wanted confirmation.  She gets the classic dermatitis herpetiformis that is apparently only linked to Celiac (???).  I take a picture every time it pops up (always after gluten-exposure). 

If anyone else is familiar with what dh looks like, I can email the pics and have you see what you think.

The thing is, I'm sold that she's Celiac.  It's more my mom that is doubting the diagnosis.  I'd like to have something to confirm it for her, but I'm not willing to do too much to my child or spend a ton of money to go about it.  I also have no idea how to find a dermatologist who is familiar with dh to take her to.

And welcome Panser! :)

[Panserbjorne]

dd has the DH.  I am quite familiar with it.

Given what you've already done, and the fact that she is diagnosed, what more does your mom want?  What are her doubts? 

[Narmowen]

Originally Posted by CrunchyChristianMama 

I was chatting on a celiac message board and someone recommended that I could have her rash biopsied if I wanted confirmation.  She gets the classic dermatitis herpetiformis that is apparently only linked to Celiac (???).  I take a picture every time it pops up (always after gluten-exposure). 

If anyone else is familiar with what dh looks like, I can email the pics and have you see what you think.

The thing is, I'm sold that she's Celiac.  It's more my mom that is doubting the diagnosis.  I'd like to have something to confirm it for her, but I'm not willing to do too much to my child or spend a ton of money to go about it.  I also have no idea how to find a dermatologist who is familiar with dh to take her to.

And welcome Panser! :)

DH isn't "linked" to Celiac.  It's a separate thing.  Basically, it's an allergy to gluten (or sensitivity) (which I understand Celiac is).  Unrelated to Celiac, although it is seen fairly often in conjunction with Celiac.  DH shows in the skin while Celiac shows in the gut.

I've had DH for more than 10 years.  I've had several skin biopsies, and went off gluten for about 4 months to confirm.  When I'm not pregnant, I'm on Dapsone, which completely removes the symptoms.  If I eat a lot of gluten, I get the skin problems (fingers, toes, elbows & knees).  If I eat just a bit (not eating bread, cereal, etc) I don't have any reactions.  I have a natural aversion to bread, though.

[Panserbjorne]

well, it's linked to celiac in that it's a related issue.  one manifests in the gut, the other on the skin.  It's not uncommon for someone to have both, and both are a result of a reaction to gluten.

[scsigrl]

If you have DH, you have Celiac's.  I have heard that from several Celiac's specialist.  Also, I am  sure this is splitting hairs but Celiac's is not an allergy or intolerance. It's an autoimmune disease.

So I would totally do a biopsy of the rash if you want a 100%  dx.

[Panserbjorne]

Originally Posted by scsigrl 

  Also, I am  sure this is splitting hairs but Celiac's is not an allergy or intolerance. It's an autoimmune disease.

it's not.  I was going to say the same thing.  It's not an allergy.

DH is a separate dx, but yes...I've never seen DH where CD wasn't present.  However not all folks with CD have DH.

[scsigrl]

Originally Posted by Panserbjorne 

Originally Posted by scsigrl 

  Also, I am  sure this is splitting hairs but Celiac's is not an allergy or intolerance. It's an autoimmune disease.

it's not.  I was going to say the same thing.  It's not an allergy.

DH is a separate dx, but yes...I've never seen DH where CD wasn't present.  However not all folks with CD have DH.

:)

And yes, exactly what you said!

[CrunchyChristianMama]

Originally Posted by Panserbjorne 


DH is a separate dx, but yes...I've never seen DH where CD wasn't present.  However not all folks with CD have DH.

After some research that's what I found too.  You don't have to have DH to have CD, but if you have DH, you have CD.
 

[CrunchyChristianMama]

I've got a question for you guys and I can't seem to find anything on it.  My DD is weaned now, but will occasionally drink breastmilk when she has the stomach flu or something.  Do I need to worry about gluten transmission via breastmilk?  I eat mostly gluten-free since we don't have any gluten in the house, but if we eat out or whatever I don't worry about it.

[Panserbjorne]

sorry to be the bearer of bad new, but yes.  Unfortunately you will need to be thinking about that until she's done.

[CrunchyChristianMama]

Fabulous.  That gets me thinking about how many Celiacs also have trouble with dairy.  With the vast majority of cows in the US being fed grain instead of grass, could the gluten from their diet be affecting their milk as well?  Is that why Celiacs so often can't do milk?  Hmmm....

I also wanted to tell a great story.  We absolutely adore our church we've been attending the last couple of years.  Unfortunately, they serve goldfish crackers to the kids every Sunday morning to get them to all sit at the table and listen to the lesson.  At first, we were just sending an alternate snack for her, but then she started reacting to just sharing crayons with the kids who were eating goldfish.  So, I emailed the director and she is not only reading up on Celiac, but is having Evelyn's whole class have an alternative gluten-free snack at snack time!  While she figures out what would work best for the church to buy and/or prepare, she is having me bring popcorn from home so that she knows it's safe for her. 

[deditus]

Originally Posted by CrunchyChristianMama 

Fabulous.  That gets me thinking about how many Celiacs also have trouble with dairy.  With the vast majority of cows in the US being fed grain instead of grass, could the gluten from their diet be affecting their milk as well?  Is that why Celiacs so often can't do milk?  Hmmm....

I also wanted to tell a great story.  We absolutely adore our church we've been attending the last couple of years.  Unfortunately, they serve goldfish crackers to the kids every Sunday morning to get them to all sit at the table and listen to the lesson.  At first, we were just sending an alternate snack for her, but then she started reacting to just sharing crayons with the kids who were eating goldfish.  So, I emailed the director and she is not only reading up on Celiac, but is having Evelyn's whole class have an alternative gluten-free snack at snack time!  While she figures out what would work best for the church to buy and/or prepare, she is having me bring popcorn from home so that she knows it's safe for her. 

YES! I questioned this too and as far as I can tell, yes it could be part of the problem (besides the obvious gut damage). Cows aren't supposed to eat grain either!

I hope gluten goes by the wayside and everywhere will be safe!
 

[kittywitty]

My 6 yo's blood test (IgG?) came back negative. This really confuses me-she has all the symptoms and a TSH of 617 which is usually linked to gluten issues. We're going to see a pediatric endocrinologist next month. Hopefully they'll do more tests. We went gluten free just in case, and with our doc's suggestion, though.

[scsigrl]

Originally Posted by kittywitty 

My 6 yo's blood test (IgG?) came back negative. This really confuses me-she has all the symptoms and a TSH of 617 which is usually linked to gluten issues. We're going to see a pediatric endocrinologist next month. Hopefully they'll do more tests. We went gluten free just in case, and with our doc's suggestion, though.

IgG alone isn't enough to really get a good idea if it's Celiac's or not.  Also, if you are having additional testing (ttG or biopsy, anything but the genetic test) the child MUST BE CONSUMING gluten at the time of testing or the results are not accurate.

[kittywitty]

Thanks. I got back ahold of the doc. Forgot to ask the specific numbers, but she said IgG was + but IgA was negative. We reintroduced gluten and we're seeing an allergist next month, so hopefully we'll figure something out.