New celiac diagnosis - looking for advice on how to support my son - Mothering Forums

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Old 12-18-2011, 09:27 PM - Thread Starter
 
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I'm not sure if this is the right forum, but my 8yo son was just diagnosed with "probable" celiac disease.  His blood tests were positive (really high transglut IgA) - we are awaiting a biopsy to confirm.

 

Given how high his antibody levels are, I'm pretty we will be going gluten-free after the biopsy in 6 weeks.  I found the celiac.com website which has a lot of great information, so I'm preparing for that shift.  

 

I guess the question I have here is how do I support my son in this?  How do I break the news?  What's the best way to help him deal with saying no to food at school/friend's houses/parties/etc.   He's not very sick.  His main symptom is anemia that hasn't gone away despite months and moths of iron supplements.  So I can't really rely upon him feeling so much better after going gluten-free that the benefits will be obvious to him. 

 

Any advice you can offer would be great.  (And if all the celiacs are in another forum, let me know and I'll repost over there...)

 

TIA!

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Old 12-19-2011, 06:08 AM
 
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:hug

 

I am sure you already know this but is your son hasn't had a biopsy yet he MUST stay on gluten till he has it.

 

My DS (almost 5) was pretty much asymptomatic prior to his DX.  He had zero Vit. D level so we were sent to and Endocrinologist who did the Celiac blood test which came back a high +.  His biopsy was inconclusive and after speaking with "the" Celiac Dr. here in the US, we decided to go GF and retest his blood in 6 months. this was 2 years ago and we already had a long list of food allergies so adding one more wasn't a big deal really for him (for me, that was another story ;)  Sorry I can't be of any help there.


That said,  if you need help finding alternative or recipes, ask away.  Because our list includes dairy, egg, peanut and tree nut, there aren't many safe options for us but for gluten free only there's a ton out there!

Udi's bread

King Arthur Flours

Chex

Mary's Gone Crackers

 

 

These are some products that are popular in the GF community. I see you found the forums on Celiac.com which is a great place too!

Good luck!

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Old 12-19-2011, 07:00 AM - Thread Starter
 
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Thanks scs.  Did your son's antibody levels go down?

 

We are still on gluten until the biopsy, so nothing is different right now.  I kind of feel caught in a weird in-between stage right now, esp. because we haven't told A anything yet.  

 

I assume we'll go GF after the biopsy even if it's inconclusive and see if it fixes his iron problems, but it would be nice to actually have a doctor's note in hand for school/camp/etc.  It seems like it would be much easier to have his condition taken seriously.  

 

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Old 12-19-2011, 07:30 AM
 
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Yes.  His original ttG was over 100 (I am tinkling 150ish?)  At 6 months it was at 48 but at a year only dropped to 38.  We scoured to find out why and after testing foods his mustard to be the offender. We are going for blood work this week to see where we are at now.  Hoping they are down to normal (under 20).  I agree that getting the dx is helpful esp for school.

 

I would ask your GI if in the absence of a + biopsy they will diagnosis it as Celiac if you have decreasing ttG levels after going on a GF diet.  From all my research and from Dr. Fasino, a falling ttG after going GF is a positive.  Not all Drs. think that way but I trust Dr. Fasino (he's the one who does all the research here in the US).

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Old 12-19-2011, 06:18 PM
 
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We have been gluten-free for 3 years and it has gotten a whole lot easier, with many new products coming into the stores. As far as him being in other places, I would just plan on packing him a snack that he can eat when other children get theirs.

 

I have a list here http://pinterest.com/fruitfulmomma/gluten-free-food-manufacturers/ of several of the manufacturers of gf foods. If you have a Whole Foods Market nearby they have their own line of GF frozen baked goods. Many grocery stores are starting to put labels on the shelves in front of gf foods.

 

And if you like to bake or cook from scratch there are a ton of recipe websites out there now. Also many books that may be available in your library. This is a good one http://www.amazon.com/Gluten-Free-Kids-Raising-Children-Conditions/dp/1606130064/ref=sr_1_4?ie=UTF8&qid=1324343851&sr=8-4 -

Gluten-Free Kids: Raising Happy, Healthy Children with Celiac Disease, Autism, and Other Conditions by Danna Korn.

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Old 12-21-2011, 10:49 AM - Thread Starter
 
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Thanks for the advice!  The more I look into GF eating, it doesn't seem so bad.  I just need to learn how to deal with baking, primarily.  What a change though - yikes!

 

(thank goodness my son's favorite food is rice...)

 

We're eating gluten until the biopsy and going GF after that.  It's nice to know that we might be able to get an official diagnosis even if the biopsy comes out indeterminate but his symptoms improve with a GF diet. 

 

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Old 12-21-2011, 10:56 AM
 
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With "just" a gluten free diet, there are a ton of options.  Bob's Red Mill has a lot of GF flours (not suitable for people with nut allergies though!).  I am a HUGE fan of King Arthurs GF flours and mixes.  Xanthan gum is often used so grab some of that when you do go GF. There are a TON of blogs with great recipes as well!

 

Plus you can always ask here :)

 

 

 

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Old 01-02-2012, 11:42 AM
 
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Hi there,

We just got results back for the twin we did NOT suspect to have Celiac and she tested positive.  (She has no sympotms we have recognized while our other twin has symptoms but a negative set of test results...go figure).  The girls also have two cousins with Celiac Disease.  I'm not convinced I'm going to do the intestinal biopsies--sounds so invasive! (one cousin did and the other did not).  What prompted you to go beyond the blood tests? 

Hang in there!

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Old 01-02-2012, 11:51 AM
 
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We did the biopsy after 3 blood tests, several months of milling it over and a second Dr's opinion.  It was not an easy decision for us at all.

 

Our DS was really asymptomatic as well.  We only tested for Celiac because he had zero Vit. D.  

 

I would talk to your GI. Given the family link, they may be willing to give you a dx without a biopsy if you go GF and the tTG levels fall. That would be ideal (I think!)

 

Good luck!

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Old 01-03-2012, 07:23 AM - Thread Starter
 
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In our case, our son also had H. Pylori in his stomach, which can cause damage and lead to internal bleeding (thus causing anemia, which is his main symptom).  So we were going to have the GI scope his stomach and see if there is any damage there.  Continuing on to the small intestine is not that much different.

 

That being said, we haven't even talked directly with the GI specialist yet.  They are only in town for 2 days a month, so getting an appt is a bit tricky.  It may be that at our appt next month they advise against it and decide that his anemia must be from celiac and we go from there.  Until then, we are sticking to gluten so that the biopsy results would not be skewed.  

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Old 01-03-2012, 01:03 PM
 
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Thank you for the feedback.  I'm really puzzled that our second daughter (the one with symptoms) tested negative for Celiac...hmmm.  Any thoughts/suggestions?

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Old 01-03-2012, 07:14 PM
 
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Quote:
Originally Posted by mamaupupup View Post

Thank you for the feedback.  I'm really puzzled that our second daughter (the one with symptoms) tested negative for Celiac...hmmm.  Any thoughts/suggestions?



They are twins and share genetics. Just because A tested negative does not mean it isn't going to be Celiac some time.  We didn't even test DD (our second child) because the genetically speaking, they're bound to be pretty darn close.  So while B may have been the one who tested +, I wouldn't expect A to be completely in the clear.

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Old 01-10-2012, 01:35 PM
 
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There's also gluten intolerance. My daughter and I both tested negative for celiac, but she and I (and my son) are all gluten intolerant (and I have a celiac gene as well). A gluten free diet isn't that hard but it does take some getting used to. We've been doing it for 3 1/2 years now (along with other intolerances which make it more difficult). One of my friends has two sons who are celiac (both asymptomatic, but tested because they have type 1 diabetes, and that shares a gene with celiac). Their numbers didn't go down the first year but they were having communion wafers each week, having french fries in shared (read: cross contaminated) fryers out at restaurants once a month, etc. There's a learning curve for sure.


Kathy, mother of 3, wife of 1. My new recipe blog: www.kathysrecipebox.wordpress.com (no longer searchable by allergen, but at least it doesn't have a virus!)
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Old 01-11-2012, 02:22 PM
 
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:) Heading to the pediatric GI specialist tomorrow.  I think I know what he's going to say, "always avoid gluten."  Any suggestions on questions to ask him?  Are there any additional tests I should run?  For related diseases/etc?

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Old 01-11-2012, 05:51 PM
 
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Hope everything goes well for you and you get the answers you need! As already stated above some doctor's will diagnose without a positive biopsy and some will not. You might want to check this article out http://journals.lww.com/jpgn/Abstract/2011/06000/HLA_DQ_Genotyping_Combined_With_Serological.14.aspx

Glad to hear you will be trying the gluten free diet no matter what the biopsy says! A trial of diet is the best test in my opinion :p

 

It will be an adjustment but once you get the hang of things the gluten free diet really isn't as restricted as people think, especially if you don't have any other food intolerances to go along with it. As far as helping your son to cope there are a lot of books out there http://www.amazon.com/Favorite-Childrens-Books-Celiac-Disease/lm/R1JL5TXINT16FS

I thought this one was really cute http://cecilceliac.com/

 

 

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Old 01-22-2012, 09:36 AM - Thread Starter
 
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Thanks for the links.  

 

We got a copy of "The GF Kid" from our library.  It's really great for a kid his age and walks through the disease, how to deal with a GF diet, and all sorts of issues kids might encounter (sleep-overs, school lunches, etc.).  We've already read it half a dozen times - he likes it, and I think it kind of provides a "person" he can relate to, if only on paper.  He knows 2 kids at school who are GF, too.  

 

We still have 2 weeks before we see the GI specialist.  Bah.

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Old 01-22-2012, 01:59 PM
 
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Thanks everyone!  I love the book suggestions too!  They are great!  I agree that GF isn't that hard once you're used to it.  We luckily have kids who eat lots of fruits and veggies.  What I do need is a great pancake mix.  Any suggestions?

 

Also, we're headed to a larger city for a second opinion with a well-known Celiac/GI specialist.  I think that'll help me on our diagnosis path!

 

I did hear the following statistics from a woman conducting a study:

30% of the general population carries the Celiac gene(s)

10% of people with confirmed Celiac do not have the Celiac gene (which leads me to believe there is another gene beyond DQ2 and DQ8 that hasn't been identified)

 

More (gluten-free) food for thought!

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Old 01-22-2012, 05:47 PM
 
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We are big fans of Cherrybrook Kitchens pancake mix.  We deal with a ton more than just gluten though.  I think the GF Bisquik (sp) is suppose to be goo as well as Bob's Red Mill.

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Old 01-23-2012, 11:38 AM
 
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Thanks, I'll try it!

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