Celiac Disease

[Willow Rosette]

Toria's stomach specialist just called me and Toria tested positive for Celiac's desiese. On the 9th they are going to go down with a scope and take a biopsy to verify the blood work.

Does anyone have any good sites with info?

[Agaliha]

That sucks :(
I hope she's doing well!



Celiac Disease Foundation (http://rds.yahoo.com/_ylt=A0oGkw.DsGJIciwAhBRXNyoA;_ylu=X3oDMTByZ3RtN3J1BHNlYwNzcgRwb3MDMgRjb2xvA3NrMQR2dGlkAw--/SIG=11auiq8bg/EXP=1214513667/**http%3a//www.celiac.org/)--Source of information regarding Celiac Disease and Dermatitis Herpetiformis.
Celiac disease - MayoClinic.com (http://rds.yahoo.com/_ylt=A0oGkw.DsGJIciwAiBRXNyoA;_ylu=X3oDMTByN2s4bDgzBHNlYwNzcgRwb3MDNARjb2xvA3NrMQR2dGlkAw--/SIG=12ba3ns4d/EXP=1214513667/**http%3a//www.mayoclinic.com/health/celiac-disease/DS00319)
Celiac Disease and Gluten-free Diet Information Since 1995 (http://rds.yahoo.com/_ylt=A0oGkw.DsGJIciwAihRXNyoA;_ylu=X3oDMTByYWZxb2M3BHNlYwNzcgRwb3MDNQRjb2xvA3NrMQR2dGlkAw--/SIG=11a4ojg70/EXP=1214513667/**http%3a//www.celiac.com/)-- Provides information and support for people with celiac disease or gluten intolerance. Includes gluten-free and wheat-free diet resources.
Understanding Celiac Disease (http://rds.yahoo.com/_ylt=A0oGkw.DsGJIciwAkhRXNyoA;_ylu=X3oDMTByOHJhc2x0BHNlYwNzcgRwb3MDOQRjb2xvA3NrMQR2dGlkAw--/SIG=12q5ed3bg/EXP=1214513667/**http%3a//www.webmd.com/digestive-disorders/celiac-disease/celiac-disease)
Celiac Disease (http://rds.yahoo.com/_ylt=A0oGkw.DsGJIciwAkBRXNyoA;_ylu=X3oDMTByYzByMHM1BHNlYwNzcgRwb3MDOARjb2xvA3NrMQR2dGlkAw--/SIG=12or21dou/EXP=1214513667/**http%3a//kidshealth.org/teen/diseases_conditions/digestive/celiac.html)
Celiac Spruce Association (http://www.csaceliacs.org/index.php)


Also look though these Amazon.com listings (http://www.amazon.com/s/ref=nb_ss_gw?url=search-alias%3Daps&field-keywords=Celiac+Disease&x=0&y=0) to see if any books look good.

PS: Do you mind if I move this to another forum-- Either general Heath/Beauty or Caring for Kids (http://mysticwicks.com/forumdisplay.php?f=473) or Parenting Children with Special Needs (http://mysticwicks.com/forumdisplay.php?f=470) (which would fit as well)?
(http://mysticwicks.com/forumdisplay.php?f=470)

[SphinYote]

A couple of links:

http://www.celiac.org/

http://www.enzymestuff.com/conditionceliac.htm

Sidenote:
Also, celiac disease is often found in conjunction with casein intolerance, I don't know if you'd want to test for that at this point, its a milk protein....but if you notice any behavioral changes in her after she drinks milk or has any dairy products, might be worth looking into. What happens is that the breakdown of casein is incomplete due to enzyme issues, and what is left acts like an opiate (which means that should you decide to cut milk from her diet, I haven't heard of this consistently happening, but I've read a few cases of kids having withdrawal symptoms).

Good luck. *Hugs*

Yote

[Poledra]

I read a wonderful blog by a woman diagnosed with Celiac and her learning to cook for herself. She has recently published a cookbook on the same topic. I highly recommend it for the resources she provides (gluten free brands, links, recipes, etc) as well as her writing.

http://glutenfreegirl.blogspot.com/

Poledra

[Willow Rosette]

Thank you all so much. I did a bunch of research last night and even though I knew the basics about it before the Dr. called I was still suprised.

The Dr told me not to change her diet untill after the biopsy so thats what Im going to do. Im going to sit down and start talking to her about it this afternoon a little. In kindergarten she had a boy in her class that was on a super strict diet so she will have something to compare it to.

It makes me sad that she has been in pain this long and we are just now findind it out and being able to deal with it. But I just keep reminding myself of all the things that could be wrong with her this is ok. We can live with this and deal with this.

[Ceres]

Thank you all so much. I did a bunch of research last night and even though I knew the basics about it before the Dr. called I was still suprised.

The Dr told me not to change her diet untill after the biopsy so thats what Im going to do. Im going to sit down and start talking to her about it this afternoon a little. In kindergarten she had a boy in her class that was on a super strict diet so she will have something to compare it to.

It makes me sad that she has been in pain this long and we are just now findind it out and being able to deal with it. But I just keep reminding myself of all the things that could be wrong with her this is ok. We can live with this and deal with this.


I have a friend whose children are Celiac and she had to diagnose them herself, doing all her own research and then she had to fight tooth and nail to get the doctors to believe her and then finally they did the testing that confirmed what she had been trying to convince them of.

So dont feel at all bad that this wasnt discovered sooner because it seems you are fortunate in your doctor and it seems a difficult disease to pin down. By the way, my friend's kids are very healthy now that they have been doing the diet for so long (this was well over 5 yrs ago now). She did decide to homeschool though, because the schools wouldnt co-operate with the level of seperation her kids needed from the foods they were allergic to, s be prepared to be very insistant!

[Willow Rosette]

I was amazed at how important it is to keep cross contamination from happening. You would think one little crumb wouldnt be a big deal but it is a HUGE deal.

I dont understand why she had such a problem. Am I missing a step that I havent thought of for school? Cause if she is packing their lunches wouldnt they be ok as long as they didnt decide to share?

[aranarose]

Part of the problem is that kids do decide to share, but also kids are not exactly neat about the way the eat. So crumbs can be flying all over the place, and if a crumb gets in a kid's food, it's enough to set off a reaction, even if they didn't notice it was there.

[Willow Rosette]

Is there something the school can do about that? Seperate them maybe? Toria and I have talked about it and she knows if she shares her stomach pains will come back. Im wondering what else can be done by the school. Since it is still the beginning of summer break I havent quite gotten to thinking about everything.

Im glad things like this are comming up so I have time to think about them and plan for them.

[Sun Sprite]

I am gluten and lactose intolerant too, so I know how rough it can be! i went years without desserts, only eating meat and vegtables. That is no longer necessary.

Even Wal-Mart and Krogers carry lactose free ice cream now (about $4.00 for a quart). Too much for frequent eating, but once or twice a year it's a great treat!

Both also carry many rice noodles and desserts, either pr-baked, or bake your own. We also go to Whole Foods, where there is more selection and variety, but only once a month.

Some options - Pamela's cookies - pre-baked deliscious, and not cheap (about $3.50 for 9 cookies). Another brand kinniciiick has a pack of 20 or so chocolate chip cookies for about the same. There are also a couple of brands of gluten free pretzels. As for breads, cake mixes, muffins brownies - look for Gluten Free Pantry, or Bob's Red Mill. If you bake your own cakes (at $5.00 or less, you can't buy a pre-made one for that, watch out for the icing, some have gluten in them).

Spagehtti and macroni noodles - deBoyles is the best I have found so far, there are a few others that are okay too. I found it takes two boxes of noodles to two pounds of turkey burger and can feed two adults for most of a week. The Tinkyada brand, or something like that, are okay for some things. Only problem with the macroni type noodles - they tend to dry out after being cooked, and need extra water to re-soften them. I don't have that problem with the spgehtti, but it has a whole bottle of sauce and a bottle of italian dressing in it.

Also, if you watch the sales, rice dream and soy milk are about the same as regular milk in price now. you can even make pudding with them, just use a bit less milk, and 1/4 cup cornstarch.

In most mixes, you will find, the cornstarch is used in place of the gluten to thicken things (also useful for potato soup). You may find you need a little more sugar than necessary.

Also, watch out for "breaded" meats - they are covered in gluten, and takeing the breading off and even washing it will not decontaminate it.

Check cornmeal, and make sure it does not have flour added.

Here is a easy meatloaf recipie: Two pounds turkey burger, one pound mild pork sausage, ketcup and barbecue sauce to you flavor specifications (about half a bottle of each), four eggs, about a cup of oatmeal (check to make sure it is a safe source asatmeal and wheat are often stored in the same silos), three one quart bags of finely crused corn or rice cereal, salt to taste, and even onions if you like. Bake at 350 degrees for two hours.

I can look up a few websites if you like. I only get to check in on weekends.

Best Wishes,
Sun Sprite

[Willow Rosette]

Thank you SunSprite. My Mom does some gluten free stuff so it wasnt a total WTF does that mean for me LOL. Our Trader Joes and Raleys are pretty good about carring them and I was thinking baking bread might be better since all the ones I have tried that are store baught are umm kinda hard as a rock.

I found this (http://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html)site and I think when I have the cash Im going to buy gluten free for dummies. I was looking at it last night and it looked like it would be a great help.

[DreamSpell333]

I've had to take all dairy out of my diet because of severe reactions. It used to be mild,but now when I drink dairy or eat anything with milk / cheese I suffer the entire day. I actually had to go to the ER once and get iv fluids. So I've said no more and have been watching my diet .
I found gluten and dairy free butter made from olive and flac oil by smart balance.
Vinny and I both have been drinking soy milk (he's lactose too)

I shouldnt eat eggs,or peppers or broccoli as they dont agree with me either. It wasnt ever this bad until I had my gall bladder removed.

My husband keeps forgetting im not eating anything with dairy now,and brought home lasagna for dinner the other night too! UGH

[Willow Rosette]

Ohhh DS thats awfull! We drink soy milk too but we always have only because I was alergic to milk as a child and so was Toria's father. So as soon as she started drinking milk I gave her soy.

Having to cut foods out and find substitutes is a pain. Ive been reading for hours and hours and just started to understand it all. I thought I knew what I was getting into but Im slowly realising this wont be much of a change for Toria but for me it is going to be a big deal (since Im the one having to read these recipes).

[Brigid Rowan]

Hi!

My son is gluten free due to suspected Celiac. We did the scope/biopsy, but it came back inconclusive (pretty common result in young kids) and oats and gluten make him symptomatic, so we went GF.

You are right, dont take her off oats or gluten until AFTER the biospy.

Go here: http://www.glutenfreeforum.com/

A clearinghouse of info.

We eat a lot of rice, tinkyada gluten free pasta, omelets, sausage, chicken, beef, pork, beans, gf pudding, namaste mixes (brownies/cakes), rice breads, ice creams, popscicles, cool ranch doritos are safe, so are cocoa crispies, fresh fruit and veggies, pretty sure M&M's are gf...~Ponders~...trader joe's has a full GF list online too.

PM me if you need anything!!

[Willow Rosette]

Thanks for the link Brigid Rowan! Did your son have a positive blood test too? And then a negative biopsy? I kinda assumed if the blood test came back positive the biopsy was just to see how much damage has been done. I found a great bread recipe just a minute ago as well as a detailed list of all the flours and what they are good for and not so good for and how they taste.

I love Trader Joes!!! I wonder if they have the GF list online. That way I would know what they had before I went searching for my first grocery shopping adventure.

[Brigid Rowan]

http://www.traderjoes.com/labels_and_lists.html

[Willow Rosette]

I just love TJ's LMAO. BR Your fast LOL I had just made the thought when you had it posted. Thank you so much!

[Brigid Rowan]

Hey, we've been living this way since january, I am an expert on GF foods..lol!

[DreamSpell333]

Ohhh DS thats awfull! We drink soy milk too but we always have only because I was alergic to milk as a child and so was Toria's father. So as soon as she started drinking milk I gave her soy.

Having to cut foods out and find substitutes is a pain. Ive been reading for hours and hours and just started to understand it all. I thought I knew what I was getting into but Im slowly realising this wont be much of a change for Toria but for me it is going to be a big deal (since Im the one having to read these recipes).

Yea, It's not going to be easy for me either. Alot of stuff has been bothering me lately,so im hoping if I cut all dairy out of my diet that it will work. otherwise I'll have to go see my doctor. Plus I love cheese and dairy and it really bites that I cant have it. The lactaid pills are expensive and I found that I had to take atleast 3 at a time for them to work. Figured it would be easier to just go dairy free.
I love soy milk too. I had for a treat the other night some rice crispies with soy milk and alittle sugar and cinnamon. Will have to look into lactose free icecream as well. or sorbet which is good :)

[Willow Rosette]

DreamSpell do you have a Trader Joes close by? They are a great store and pretty much have everything someone would need for a specific diet. I know for us it will make the transition easier to have the things we like but in a healthy and safe version.

[Cloaked Raven]

WR, I don't have any info for you but I just wanted you to know I'm keeping both you and Toria in my thoughts and prayers. I'm here if you need me. :hugz:

[Willow Rosette]

WR, I don't have any info for you but I just wanted you to know I'm keeping both you and Toria in my thoughts and prayers. I'm here if you need me. :hugz:

:hugz: Thank you so much, there is so much that shocks me.

I just read I should have new pots and pans and strainers and cutting boards I was like HUH??? I cant afford that! I dont even know where I will put a new toaster much less all that stuff to keep it safe.

[WitchOfEndor]

I'm so sorry you & Toria have to go through this. You're both in my prayers. :hugz:

[DaNcInG_WiNd]

Here's a really good place to order gluten free foods. However they can be a little pricy.


http://www.glutenfreemall.com

[DreamSpell333]

DreamSpell do you have a Trader Joes close by? They are a great store and pretty much have everything someone would need for a specific diet. I know for us it will make the transition easier to have the things we like but in a healthy and safe version.

The closest TJ's to us is in Massachusetts. Atleast 2-3 hours away I believe.. Theres a few stores downtown here I will have to check out though.

[Willow Rosette]

The closest TJ's to us is in Massachusetts. Atleast 2-3 hours away I believe.. Theres a few stores downtown here I will have to check out though.

Oh thats such a bummer!! I would be so sad if your nearest Trader Joes was that far away.