Celiacs Disease

kellylynnshonting · January 2017

I am posting this for my niece who will be going in one day this week for food sensitivity testing. One of the things that she'll be tested for is Celiacs Disease.

Of course, it's not something that I want her to have, but I realize that it won't be the end of the world if she does...it's just that she is only 6.

I was hoping to chat with anyone who may have Celiacs. How have you adjusted to it? What has been the biggest change you've had to make? What's been your biggest struggle? Are there any tips or tricks for how to deal with something like this?

Any advice or information would be fantastic and greatly appreciated.

Jellybewbie · January 2017

Hello there - I might be able to talk to you some about this

about 1 year ago (when I was 24) I developed symptoms of food allergy with lactose soy and gluten.

It took me a little while, 20 years of eating everything I wanted! However I have found there are some amazing substitutes to what I can eat and some I really really enjoy. It takes time to get used to what you can and cannot eat, however it quickly becomes part of the routine.

I would start by looking at ingredients now on packages just to get into the habit of it, also check with your supermarkets, and sometimes their own things taste better (and are cheaper) than the branded things.

If you wish to know anything else, please feel free to send me a message

kellylynnshonting · January 2017

The best part about this is that my niece is not a picky eat...she loves everything. I know that outside of Celiacs she is also getting tested for lactose intolerance. I think that the biggest worry about her testing positive to one or both will be how her parents have to handle this new change and also the new lifestyle that comes with it.

Master_Butcher · January 2017

It really isn't abstructive in terms of main meals. She can eat any meat source she wants along with rice, rice noodles, potatoes, sweet potatoes, beans, vegetables the lust is endless. Fats will obviously fall in. Where it can get tricky is if she's a snack type person. Her new lifestyle basically forces her to eat healthy by default. That's not a bad thing in my eyes. And she could always make the GF version of anything if she really really wanted to (That should be sparingly tho. Sugar is still sugar)

Jules_farmgirl · January 2017

With any hope for her, she will come back with only a gluten sensitivity and possibly lactose (the two go hand in hand a lot). These are much easier to manage than Celiacs. With Celiacs, your body literally CAN NOT process gluten at all. Ingesting it would make you very very ill. Whereas with a sensitivity, you may not want to leave the bathroom when you accidently have some, but its not as severe. I have an aunt and one cousin that are Celiac, where as my mom and 2 sisters are all just gluten intolerant. Their difference in diet on a day to day doesn't seem much different, but there level of awareness of going out somewhere or treating themselves is much different.

That is NOT saying all gluten intolerant people go off the rails and binge on gluten sometimes, I am simply saying the end result is vastly different if gluten is ingested.

kellylynnshonting · February 2017

This is a very good start with a lot of great information. Thanks to everyone who shared.

AZCycle · February 2017

I have Celiac Disease (diagnosed three years ago), along with some thyroid issues (associated with CD) and recently, and egg allergy. I'm happy to answer any questions you have. Feel free to "friend" me and PM me anytime.

One benefit of starting so young is that she'd probably respond to the diet and lifestyle change well. I would urge her and her parents to take it seriously if she IS diagnosed with celiac. I've been told by folks "Oh, you can cheat every once in a while!" DON'T CHEAT. It is NOT worth the pain, discomfort and literal intestinal damage that happens EVERY time you eat gluten. An occasional cross-contamination is bound to happen, but they need to take it seriously... keeping kitchen clean and free of gluten, etc... especially if the kitchen is going to be shared. My wife and four-year old still eat a lot of gluten-containing foods so I have to be careful about cross-contaminating cutting boards, utensils, etc. And I have a list of local restaurants that I know will be pretty safe for me.

When I get "glutened" my reactions vary. Because it's an auto-immune disease, the body attacks itself because it can't figure out what is going wrong. So I've had everything.... mouth sores, geographic tongue (gross and painful), arthritis-like joint pain, bloating, gas, severe intestinal pain, migraines, lethargy, memory-fog, etc. My last "glutening" put me in bed for a whole day with flu-like symptoms and a 102 degree fever.

The diet/restrictions are difficult at first, and sometimes looking for GF products can be tedious. BUT the GF diet has become so popular that there are SO many more products now than even three years ago when I got diagnosed.

Right now, the only way to treat CD is with diet. So she needs to take it seriously.

Best of luck, and I hope that she gets the "all clear" from her doctor. But if she is diagnosed it is NOT the end of the world. It takes some changes in diet but it is completely "doable."

kellylynnshonting · February 2017

Thanks to everyone who has shared. As of now, she doesn't have CD, but the mystery still remains as to what exactly is going on with her. I will let you all know as soon as it is figured out.

MiVidaFlores · April 2017

Hi I was just diagnosed with celiac. It's been a week. This has been a hard adjustment to stay away from the sweets. I know I need to make adjustments for my health.

Celiacs Disease

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