mild positive celiac test for 6yr old

[jaybirdsmommy]

Hi,

I'm usually a lurker on here, but I know I've seen celiac related threads in the past so I'm hoping someone can help me out.

I just got a call from my 6 year old sons allergist that his food allergy testing showed a mild positive for celiac. Can someone who's done this tell me what the next step is? His aunt has celiac (diagnosed with biopsy) and his daddy has a wheat/gluten intolerance but hasn't had a positive blood test for celiac(no biopsy yet) so I'm somewhat familiar with the condition, just not sure what to do at this point (his allergist wasn't very forthcoming with information).

Obviously I'll make an appt with his pediatrician as soon as possible, but we're going out of town tomorrow for a funeral so it may be a week or so before he can be seen.


Any help or advice would be greatly appreciated.

Thanks for your help.

 

[Mom2Nick]

I would get a referral to a Pediatric Gastroenterologist and seek further testing.

 

[Plantlady]

I'm far from an expert.. but this blog, she cooks one thing in a crock pot every day, and one of her kids has celiac, so all of the meals are safe for the kid, and she talks about alternatives a bit.

http://crockpot365.blogspot.com

 

[fimac]

It depends on what blood tests were done. You have the choice of doing a biopsy or not depending on your feelings. If you want the biopsy do not take him off gluten until after it is done.

What were his symptoms that made you look for a food allergy ? How desperate are you to fix his diet ?

I would start looking at what you will need to change in his life to make gluten free. Look at his diet and see what is going to need alternatives, and what you can find locally that is good.

It is better to find good choices if you are having to take away his favorites.

 

[feenie]

my God Son is allergic to Wheat (and soy and eggs...) and his mom has found some great products for pancake mixes and cake mixes and even bread and pie crust that work really well.
I'm sorry I don't know the brands off the top of my head, but if you are interested I can find out.
They also have pre-made cookies and breads out there that are gluten (and a bunch of other allergys) free.
I have actually tried a few, and they really are not bad.
The only problem is they are kind of expensive, but she orders them on Amazon.com now in bulk and that saves some.

 

[Kathi OD]

Having celiac is not the same as being allergic to wheat. In all honesty, if your child has "mild" celiac now, he has celiac...period. As my gastroenterologist once told me, having celiac is like being pregnant...you can't be a little bit pregnant and you can't be a little bit celiac. You either are or you aren't. If you are, you need to be on the gluten free diet, and ASAP.

People don't realize how serious celiac can be since the body's reaction isn't as outwardly severe as say a peanut allergy. However, every time you eat gluten, the villi of the intestine are eroding, rendering the body incapable of absorbing the nutrients it needs from the foods you eat. Malnutrition and other, more serious conditions, such as osteoporosis, gastroenterological cancers, neurological disorders, and in children, short stature.

Since celiac is a genetic condition, the fact that other family members have already been diagnosed, would make me run as fast as possible to a gastroenterologist for a more definitive diagnosis.

 

[KSchwagg86]

Having celiac is not the same as being allergic to wheat. In all honesty, if your child has "mild" celiac now, he has celiac...period. As my gastroenterologist once told me, having celiac is like being pregnant...you can't be a little bit pregnant and you can't be a little bit celiac. You either are or you aren't. If you are, you need to be on the gluten free diet, and ASAP.

People don't realize how serious celiac can be since the body's reaction isn't as outwardly severe as say a peanut allergy. However, every time you eat gluten, the villi of the intestine are eroding, rendering the body incapable of absorbing the nutrients it needs from the foods you eat. Malnutrition and other, more serious conditions, such as osteoporosis, gastroenterological cancers, neurological disorders, and in children, short stature.

Since celiac is a genetic condition, the fact that other family members have already been diagnosed, would make me run as fast as possible to a gastroenterologist for a more definitive diagnosis.

This is spot on

 

[jaybirdsmommy]

Thanks for everyone's advice.

My husband called his gastro (who doesn't see children) and got a recommendation for a pediatric gastro. I didn't know such a thing existed. That will be our next step. Given the family history we are definitely going to take this seriously.


flmac - He started complaining about 6 months ago about having stomach pains after eating. It was especially bad if he'd eaten a lot of fast food (about the only time he gets large quantities of wheat). The symptoms just looked too much like his Daddy's to ignore, that's why we had him tested.


Kathi-OD - Thank you, you've confirmed what I was thinking. The allergist kept emphasizing "mild," like it was no big deal.

I also appreciate the food suggestions. We live in a small town and don't have many options (nearest Whole Foods is 2 hours away). I love the crockpot blog site that Plantlady recommended. We try to eat gluten free at home as much as possible but I know he'll have a hard time giving up his pizza and pancakes.

 

[Traveliz]

Thanks for everyone's advice.

My husband called his gastro (who doesn't see children) and got a recommendation for a pediatric gastro. I didn't know such a thing existed. That will be our next step. Given the family history we are definitely going to take this seriously.


flmac - He started complaining about 6 months ago about having stomach pains after eating. It was especially bad if he'd eaten a lot of fast food (about the only time he gets large quantities of wheat). The symptoms just looked too much like his Daddy's to ignore, that's why we had him tested.


Kathi-OD - Thank you, you've confirmed what I was thinking. The allergist kept emphasizing "mild," like it was no big deal.

I also appreciate the food suggestions. We live in a small town and don't have many options (nearest Whole Foods is 2 hours away). I love the crockpot blog site that Plantlady recommended. We try to eat gluten free at home as much as possible but I know he'll have a hard time giving up his pizza and pancakes.

Well lucky for you there will be no need to give up pizza and pancakes - they will just be made with different ingredients. My husband has celiac's and uses alot of Bob's Red Mill mixes (available at Krogers here). Additionally many pizza places are beginning to offer gluten free pizza -- and hey sounds like a reason for a trip to Disney as they have gluten free pizza as well!

Liz

 

[feenie]

I also appreciate the food suggestions. We live in a small town and don't have many options (nearest Whole Foods is 2 hours away). I love the crockpot blog site that Plantlady recommended. We try to eat gluten free at home as much as possible but I know he'll have a hard time giving up his pizza and pancakes.

We have no Whole Foods in our neck of the woods, and our natural foods store is very small and expensive.

This is the brand of gluten free pizza/bread dough that my friend uses.
http://www.glutenfree.com/
Once you get used to making it, it works really well. It took us a few tries to not make the crust too thick, but rolling it out with a lightly oiled cup worked really well. Its not exactly like the "regular" crust, but it does taste good!

They have some pancakes mixes on that site too... I am not sure if they are the one my friend used or not though.

 

[Mom2Nick]

I used www.kinnikinnick.com for a lot of the foods we used. (My kids were in a GF diet for a year as we had mixed test results for Celiac) They have great pre-made pizza crusts, coatings for nuggets, mixes for all kinds of things etc.

 

[fireworks fan]

Hi-Another celiac here. I just wanted to mention that you can order lots of different gluten free food from Amazon, if you don't have whole foods/trader joes near you. Also, there is a lot more gluten free food at my regular grocery stores now, than there was just 3 years ago when I was diagnosed.

As for pancakes and pizza, I highly recommend Annalise Roberts cookbook on Gluten Free Baking. Her pancakes are the best I've made since going gluten free and her pizza crust is crispy and doesn't fall apart under lots of toppings. Makes me hungry just to think about it.

Good luck with the ped gastro. I hope your DS feels better quickly.

 

[Kathi OD]

Just to add, do not assume that the foods you get at Whole Foods will be gluten-free. They do carry some gluten-free products, but not as many as most people think. Gluten-free and organic are two totally different things. Also, many people think that whole wheat is fine, when in fact, it is not. Whole wheat still contains gluten.

One of the best "regular" companies, when it comes to package labeling, for those of us with celiac, is Kraft. Gluten is hidden in all kinds of ingredients. For example, vinegar. In Kraft products, if one of the ingredients comes from a gluten grain it is labeled as such. For example: vinegar (wheat). Helps so much when trying to determine what foods are safe.