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Being Gluten Free


dwaters800

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dwaters800 Rookie

My son has just been diagnosed gluten sensitive. He has also had Lyme disease and fibromyalgia for 6 years. His doc says these other health problems may be related to a poorly functioning immune system due to gluten sensitivity.

It is somewhat depressing to read how easy it is to "be glutened." Does anyone out there manage to stay mostly gluten free and still lead a relatively normal life? I am devoting all my time for a while to studying how to keep my son gluten free and help him return to normal health. Please tell me that it is possible to avoid gluten and recover.

Ginny


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KaitiUSA Enthusiast

Welcome :D

Well there is alot of mainstream things we can have and alot of good brands of gluten free specialty foods(there are alot of bad ones but you'll find the good ones with help from this site)

Also, there are some lists that will be helpful..if you would like them you are welcome to email me(email is at the bottom of my signature) and I can send you some lists that will make life alot easier. There are lists of brands that won't hide anything even under questionable ingredients, there is a safe and forbidden list of ingredients, a 79 page long list of gluten free status of products,meds and foods, and more.

It really is not a hard diet to follow once you learn what to look for and what you can and can't have.

Your son can easily have a normal life and still eat alot of "junk food" like other kids do too.

Ther is alot to learn and first and it can be overwhelming but it does get easier...I promise you...it becomes a normal part of your life.

This site is a great resource and filled with tons of people who are knowledgeable and are a great support.

VegasCeliacBuckeye Collaborator

Keep the faith, Ginny.

Many of us were in your shoes (or your son's) at one time or another.

Now that you know what makes him sick, some relief should come to you.

You will need to be able to read ingredient labels and you will need to know which items are ok, which are not, which might seem ok but are not and so forth. A number of people on this site have gluten-free lisitngs (a good one if from the Delphi list) and even a listing for gluten-free restaurants (ask celiac3270).

As far as you home, a few precautions you can take is getting your son "his own" pans/pots/toaster/etc. There is some questions about using the ame pots/pans as those with gluten containing food, but this is one way to be extra safe.

Also, label stuff in the cupboard and fridge as "his" stuff. Maybe even get a breadmaker....

Lastly, ask any questions you need on this website. I guarantee someone will have the answer or will find it for you.

Good luck!

Jnkmnky Collaborator

I don't think it's difficult to remain gluten-free. I read about all these people being glutened on this web site and wonder how they manage to do it so often. My son has had two glutenings in 4 years. They occurred at the beginning. It has been three years since a glutening. He's been in pre-school, kinder twice, lived in two states, moved cross country twice, gone to summer day camps... been to theme parks, Las Vegas and more. I really don't see how adults manage to gluten themselves. If you're vigilant with your young children, they won't be glutened.

tarnalberry Community Regular

How hard it is depends on how adaptable you and he are willing to be. If you want virtually no change from your current lifestyle, then it can be hard. If you don't mind adapting to a fairly large difference, it isn't hard once you get the hang of it. Eating out will never be a simple thing. Having a constant vigilance over ingredients and cross-contamination risks carries its own stress. But you can get accustomed to these things over time. Do give it a few months though, as there is a distinct learning curve.

FaithInScienceToo Contributor

I am glad that you are determined to keep your son gluten-free, if that is what he needs to remain healthy!

Personally, I have ONLY one problem now - that is, making sure I find out if my boyfriend's mouth is "Celiac-friendly" before kissing him...

I imagine that your son has many years ahead before he needs to worry about 'safe kissing'. ;-)

Anyway...

There's loads of info here, and a whole section for moms and dads.

I hope you can find ALL of the info you need, and links to even more RIGHT HERE :-) !

Best wishes,

Gina

Jnkmnky Collaborator
Personally, I have ONLY one problem now - that is, making sure I find out if my boyfriend's mouth is "Celiac-friendly" before kissing him...

<{POST_SNAPBACK}>

Hmmm.. I never thought about that. I guess I can take comfort in the fact that my son will not be kissing any beer drinking girls when he's a teen! :ph34r: Of course, as his mother, I can assure all that my angel won't be kissing any girls other than his future wife. * I'm allowed my delusions. :ph34r:


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Guest nini

As far as "how easy is it to get accidentally glutenened?" my answer is, only if you are careless or are still learning the diet and all of the hidden glutens. I've made a few "careless" mistakes in trusting something to be gluten free that someone else made for me, or in eating something from a fast food or chain restaurant that has issues with cross contamination. IF you are vigilant and don't make those same kinds of mistakes, it's a lot easier to avoid getting "glutened" The other exception to this would be if a previously gluten free product changed it's ingredients and is no longer gluten-free, but again, be vigilant about reading labels EVERY TIME regardless of how many times you have checked if that product is safe.

Once you get the hang of the diet it is really pretty easy, and can be an exceptionally healthy diet. As long as one is not filling up on just junk food!

Good luck!

FaithInScienceToo Contributor
Hmmm..  I never thought about that.  I guess I can take comfort in the fact that my son will not be kissing any beer drinking girls when he's a teen!  :ph34r:  Of course, as his mother, I can assure all that my angel won't be kissing any girls other than his future wife.  * I'm allowed my delusions. :ph34r:

<{POST_SNAPBACK}>

Yes...you are enjoying those delusions, I see ...lol...

But, hey...you're right...your son WILL have to think before kissing :-)

That is NOT a bad thing for a mom to know! ;-)

Gina

Smunkeemom Enthusiast

It is difficult at first, but it gets easier once you find some gluten free comfort foods. I promise the difference you see in just a couple of weeks will be worth all the stress of finding what is okay to eat.

I started out thinking of things that I knew my daughter enjoyed and tried to figure out a way to make them gluten free.

It will be fine, there is a lot of food now that is gluten free and sometimes you can get it at a regular grocery store, it is becoming very mainstream. I am so lucky that my daughter was born into a time where gluten free is so easy, I am smiling thinking about how much better it will be when she is my age :D

a lot of restraunts have gluten free lists too, call your favorites and ask, I have been able to get free samples from some of them for my daughter, then if she likes it I know where I can go to get her pre-made food for like church picnics and such. :D

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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