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Celiac Disease support and info please

post #1 of 23
Thread Starter 
I love my son to pieces but if its not one thing is another thats wrong with him. Seems like forever now my middle son (cleft, GHD) has had low iron counts. And for years I have wondered about Celiac disease but all the doctors said we would know just by looking at his stools. So we just let it go that maybe he did not have an issue. We recently I had a talk with his doctor about 1) his iron levels and 2) the fact that we have such a hard time getting him to eat much. Well finally this doctor said lets run some blood tests and check where things are. One of those tests was a Celiac Panel. Well the results are in today..He said he shows somewhat of a positive. He tried to explain the results to me but I don't know if I totally get it. He said on the test up to a count of 11 is considered normal but his was a 15 or 16. So he wants me to cut all things will wheat in it for 6 mths then we will re-test to see where things stand. He said every so often he can have something with a little wheat in it but not very often.

So I just looked in my cabinet and 99% of the things I have have wheat in it. So I have to go to the store tonight and try and find things will no wheat in it. And thats a scary thought of how little he may be eating aside from meat and veggies. No sandwiches no gravies a lot of cereal has wheat etc. And I am not about to make 2 different meals so everyone here is gonna have to change their eating habits to accommodate this. And that will be hard on all of us.

But all this makes sense why he won't eat a lot of stuff anymore it probably hurts his stomach. Plus what about school?

Anyone here that has this that can give me some advice or support on this.
post #2 of 23
I'm sorry for his trouble. I'm sure there is a ton of information out there that can help...ya gotta love the internet!

I hope he feels better soon!
post #3 of 23
Aw i'm sorry to hear that hun - I have nothing to offer in the way of advice, but I wanted to send some
post #4 of 23

scrool down .... lots of info and links...
post #5 of 23
Thread Starter 
Thanks for the links I will look at them tonight. I just got another boomshell this one about my sister (the meth addict). She has had her daughter taken away from her and my family (especially my mom) wants me to go testify against my sister or really testify to make sure my niece is out of harms way. And I don't know if I should or not partly because my sister does not know that I know as much as I do. I have until Tuesday night to make this decision. BTW this is my younger sister.

When it rains it pours dang it.
post #6 of 23
It does in deed, bad luck brings trouble in groups.

Do a google search. It's not a rare disease by any means, so you should be able to find some non for profit groups/associations that have good information and offer support. Many of these sites have forums and usually there's a section for parents and spouses. There may also be some forums or sections for kids and teens with this problem.

If your son is able to understand it, share all the information with him that you can. Let him know how and why these foods are bad for him - he'll need to become his own health advocate in just a few years.
post #7 of 23
wow that really sucks if your little sister is on meth, then in my own opinion the best decision has been made to have her daughter taken into safe care. I don't know anything really about meth - but maybe this would give your sister the wake-up call to try and do something about quitting? I don't know if that message would get through a drug induced fuzz though. It's a fragile situation, I can see I do know that your sister, as much as I'm sure you love her, isn't capable of taking care of her daughter properly in her condition anyway. Aw hun.... I wish I could give you a great big hug - you sound like you could really do with one
post #8 of 23
Originally Posted by Ping View Post
Thanks for the links I will look at them tonight. I just got another boomshell this one about my sister (the meth addict). She has had her daughter taken away from her and my family (especially my mom) wants me to go testify against my sister or really testify to make sure my niece is out of harms way. And I don't know if I should or not partly because my sister does not know that I know as much as I do. I have until Tuesday night to make this decision. BTW this is my younger sister.

When it rains it pours dang it.
I suggest you go and testify against your sister. I know it sounds like a horrible thing to suggest but it is in her childs best interest especially if you want a glimmer of hope of her ever getting her back. I'm gunna spill a bit about myself since the situation kinda calls for it. I was a former meth abuser and knowing the world that surrounds it a person who is hooked on that truly evil drug is in a completly different universe. It took my family psychally coming from California and dragging me literally away from the madness. I'm truly blessed that they did because I had already lost so much to it (my home, friends, little brother hated me, miscarriage.) and I'm pretty sure I would have used till I took my last breath. If you do this for your sister you may just be saving her life.
post #9 of 23
The little girl nextdoor to me was diagnosed with it just this summer.

Chloe is 8 years old this weekend, and Celiacs is on her mums side of the family.

They've educated her on it as soon as they found out and took every bit of food out of the fridge, freezer and cupboard where they sat her down and looked at all the ingredients.

If she goes to partys her mum has to take her own food just incase they havent prepared anything for her, and her school lunchbox is also done from home. You can buy the wheat/gluten free bread here but it's really expensive, but obviously worth it.

They had a lot of help from the dietician at the hospital with a list of foods she can have and what she can't have. It's hard, but by involving her it helps her understand why she can't have the foods that make her tummy upset

If you want me to get a list of the foods he can have just let me know and i'll get the list from Catriona
post #10 of 23
It's a lot more complicated than just wheat--it involves GLUTEN--barley, oats, spelt, rye, etc. You also need to avoid any cross contamination with utensils, cookware, even dust from flour in your home. You really need more support than you seem to be getting from your doctor. It is an INTENSE transition but in order to keep the disease under control, NO GLUTEN of any kind must EVER be ingested. There is no such thing as having "a little bit" and it being OK. You do know one of the risk factors of untreated celiac---cancer?!

I had my dd on gluten free/casein (dairy free) diet for 3.5 years as part of her autism biomedical treatment. There wasn't much available for her to eat back then, but nowadays (a mere 3 years off the diet) seems gluten free is much more readily available.

I hope your family does well with the transition and he's soon feeling much more healthy.

post #11 of 23
Thread Starter 
Problem is I live in a small town there just is not much support here. And I just got back from the grocery store and that was the most depressing trip ever. Before I left I checked a list of all that he can and can not have and the names and what not. I could not find anything that was safe. And this was Wal-Mart. And I don't think Harvey's will be any better. We have one tiny health food store but I am scared of what that will cost me. I am just stressed and depressed with all this.
post #12 of 23
I agree with Cally, Celiacs is a serious illness and should not be shrugged off.

I am on a gluten free diet, just because gluten does NOT agree with me. At first it was very expensive, because I have to drive three hours to any store that carries gluten free products. However there are places you can mail order from.

You can order, in bulk, tinkyada rice pasta. It is excellent and better than wheat pasta. I just made gluten free lasagna tonight. They also make spagetti noodles, and elbow macaroni ( for mac an cheese). For meatloaf don't use bread crumbs but potato chips or minute rice.

Almost any recipe you already use can be readily adapted to gluten free and taste good. There is a gluten free all purpose flour mix that can be substituted 1 to 1 in most recipes. My mom just made the most awesome brownies from a recipe out of "O" magazine, substituting only the flour.

Sandwhiches and bread stuff are going to be the hardest. I cannot find any gluten free bread that is good.

There are some great gluten free cookbooks by Bette Hagman,

online grocery for gluten free pantry products ( their pancake mix is too die for)


This is an excellent site

If you know some things you regularly make, PM me and I can see if I can find a tried and true good GF recipe the whole family will love. A very good friend of mine has Celiacs, as does her mother, sister and nephew. So we share good recipes. She orders from someplace in Wisconsin. I can get the name for you if you like.
post #13 of 23
Thread Starter 
Well me and the husband looked online and read some stuff. Breakfast and dinner in adaptable for the most part. Lunch is the biggie. Around here sandwiches are big at lunch time.
post #14 of 23
My friend makes a lot of "wrap" sandwiches using gluten free corn tortillas. I don't know if your son would like that or not.

the link in my post has a support group section I believe. You might be able to find someone local, or a message board where people who have young children with celiacs can share their favorite lunch recipes.

No need to try and do this all by yourself, I know there are others with young kids who have already gone down this road and can help make it much easier for you.
post #15 of 23
What about gluten free flours? ...that is if you can or are willing to make homemade bread.
post #16 of 23
Thread Starter 
I am more than willing to make it homemade if I can get the gluten free flours at a somewhat affordable price. I am going to call his SSI case worker and a few other people and see about getting help with this. Plus I am going to check the one and only health food store we have here and see what they might have or see if they can order me stuff.
post #17 of 23
Thread Starter 
Just called the local health food store they do not sell any gluten free products and has no idea who might here. I am going to try one more place. Its a little further away but worth a shot.
post #18 of 23
Check with your insurance plan - it may cover visits with a dietician. They can also help you with any local sources or mail order sources.
post #19 of 23
Thread Starter 
Yeah thats what I am going to check into Monday. He recieves SSI so that does give me a leg up in the resources dept. I may also call some of the larger hospitals in Savannah and maybe see what help I can get there. There should be a doctor that deals specifically in this because I am worried about how the test was done and if its the most accurate.
post #20 of 23
How odd, the town I live in isn't that large but they do carry gluten free flours at the grocery stores - I even checked today. We have a brand here called Shawnee Mills.

Do you have any friends or family members that live in a slightly larger town and can check/pick up stuff for you? Or maybe some that take shopping trips more often then you do? Surely someone would be willing to pick some stuff up for you if you paid them for it.
post #21 of 23
Gluten free flour is in my supermarkets as well because my neighbour makes Chloe pizzas with them
post #22 of 23
Thread Starter 
Well I did make some other calls today. Publix (about 1hr away) does have a small selection of gluten free products. For the most part they said it was a few cereals, pastas and quick bread mixes. A friend of mine's FIL told me to talk to his nephew because he is into health food stuff and might know where I can get some of this stuff. My husband said he looked real hard at the flours and said he saw some wheat free (gluten free) ones. So I will check into that and I can at least make that at home well bread that is. Making home made gravy from scratch has been an experience. I looked online for recipes on making gluten free breads some things on the list I don't know where to get this things at. Like these: liquid honey, rice flour, potato flour, buckwheat flour, xanthum gum. Where do you buy these things at.

Also I wrote this list down from the internet. Does this look right for things to avoid and things that are ok.
rye (or use with caution)

Okay things:
flax seed
wild rice
buckwheat (caution)
millet, sorghum
oats (caution)
post #23 of 23
Here is the very best, hands down, source for breadstuffs---donuts, muffins, cookies, breads, pizza crusts etc:

One thing you will need to do is purchase a small chest type freezer (they run arround $100.) That way you can order big and store the products in the freezer. One thing you must realize (and will quickly learn) is that gluten free products do not have the "open shelf life" of regular gluten products. They get dry and crumbly and just YUCK very fast. I would just take the amount of product needed for ONE day out of the freezer at a time and allow it to thaw in a ziploc bag. For sandwiches, however, remember that your son will need his own condiments as the knife that dips into the family's mustard will contaminate it with gluten. LOTS to think about.

As for making homemade breads---well, I've done it. Can't really say it was good, altho with enough practice, I suppose it would become better (and I'm a good cook and baker.) Kinnikinick has some good mixes, which I found easier.

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