Having a really hard time adjusting

[Natalie14]

Hey y'all! I'm new to this but here it goes. I was diagnosed with Celiac about a few months ago, and it's been a tough journey to get where I am. But it gets really hard when there isn't any gluten-free food around. My parents make dinner every night, but often, they forget about my intolerance. And when your parents don't know a lot about gluten-free foods, there isn't a lot that they purchase for that reason. 

It's really hard to find food that I can eat without making myself sick, and it ultimately makes me want to stop eating entirely. But I know that's unheathly, and I really don't want to have that running through my head. 

Please leave suggestions on how to help. 

[plumbago]

@Natalie14

I'm so sorry you are suffering through this! The one suggestion that leapt out to me in bright neon lights was to offer either to go shopping for the entire family (depending on your age) or offering to accompany the adult who does the shopping. Then, at least at first, tape big marked cards on all the food in the house that is gluten free with the proviso that whoever is cooking for you is to use those foods with the cards on them. Ask to stock the house with tamari and remove all the soy sauce (including packets). If no other moderator on this site pops in with helpful food and shopping suggestions/links, I will try to find a good link on how to shop and keep a gluten free kitchen. Also, can you keep two toasters in the kitchen? One for you (gluten-free) and one for everyone else. If this is not the kind of guidance you are seeking, let us know and we can try to help you better.

Plumbago

[trents]

Welcome to the forum, Natalie14!

We frequently get posts from young people in your same situation. Like your parents, most family members of those with celiac disease just don't get it! It's hard for them to accept that a staple food like wheat could be that bad for you. They don't understand that it's not just about cutting back on wheat/barley/rye but totally eliminating them totally from the diet. In fact, they probably don't understand what gluten is and are really fuzzy about where it shows up in the things we eat. They don't understand that celiac disease is not just an allergy nuisance but that it is an autoimmune disorder that can seriously damage your health if not taken seriously.

Perhaps it would be a good idea to put together some educational material explaining these things to them. I mean like one page at a time with bullet points about celiac disease and gluten. Examples: "What is gluten?" What is celiac disease"? "How much gluten can cause a reaction?"

Part of the problem you see, is that family members understand that keeping you completely gluten free will likely affect the way they eat and they don't want to go there. But if they love you and are helped to understand how serious this is to your health they can be brought to the point of sacrificing what they enjoy for you.

[knitty kitty]

Welcome, @Natalie14!

Because Celiac Disease is passed on genetically, your parents and siblings (first degree relatives) should be tested for Celiac Disease before going gluten free.  

Celiac Disease has over three hundred various symptoms.  They may attribute health problems, if any, to other factors like stress or to another health condition.  Some other autoimmune diseases (Hasimoto's, diabetes) are frequently found in people with Celiac Disease.

Another idea is to write out a menu of meals you would like.  Try basing them on meals your mom prepares already, just leave out the gluten and substitute in your choices. 

[Aaron2018]

6 hours ago, trents said:

Welcome to the forum, Natalie14!

We frequently get posts from young people in your same situation. Like your parents, most family members of those with celiac disease just don't get it! It's hard for them to accept that a staple food like wheat could be that bad for you. They don't understand that it's not just about cutting back on wheat/barley/rye but totally eliminating them totally from the diet. In fact, they probably don't understand what gluten is and are really fuzzy about where it shows up in the things we eat. They don't understand that celiac disease is not just an allergy nuisance but that it is an autoimmune disorder that can seriously damage your health if not taken seriously.

Perhaps it would be a good idea to put together some educational material explaining these things to them. I mean like one page at a time with bullet points about celiac disease and gluten. Examples: "What is gluten?" What is celiac disease"? "How much gluten can cause a reaction?"

Part of the problem you see, is that family members understand that keeping you completely gluten free will likely affect the way they eat and they don't want to go there. But if they love you and are helped to understand how serious this is to your health they can be brought to the point of sacrificing what they enjoy for you.

I agree with trents .
 

You will learn with time and hopefully your family will too. When I was first diagnosed with celiac disease I got a lot of questions about it from family some will except it and try to educate themselves so they can make safe food for you, but don’t be upset if some people don’t understand and don’t want to understand what celiac disease is as long as they except you just can’t eat something because you can’t. My uncle knows that me and my cousin have celiac disease but doesn’t know what it is other then the fact that I can’t eat some things that have gluten in it ,  he never forces me to eat something because I say I can’t when I can’t. My point is once they except celiac disease is part of your life things will get better, now when I eat at my uncles I bring my own food. I wish you good luck on your new journey and If you have any other questions please feel free to ask them, we celiacs are are always learning new things, no matter how long it has been since we were first diagnosed.

[Bardot67]

14 hours ago, Natalie14 said:

Hey y'all! I'm new to this but here it goes. I was diagnosed with Celiac about a few months ago, and it's been a tough journey to get where I am. But it gets really hard when there isn't any gluten-free food around. My parents make dinner every night, but often, they forget about my intolerance. And when your parents don't know a lot about gluten-free foods, there isn't a lot that they purchase for that reason. 

It's really hard to find food that I can eat without making myself sick, and it ultimately makes me want to stop eating entirely. But I know that's unheathly, and I really don't want to have that running through my head. 

Please leave suggestions on how to help. 

I’m so sorry to read this. I know when I was diagnosed it was a struggle at first but my husband threw all our food away with gluten and now he is gluten free too. You really need support. Maybe you can get them a book to read about the disease? There are lots of gluten food recipes too. I pray you get the support you need.

[dixonpete]

My relatives never understood much about my celiac disease or other food sensitivities, and whenever I visited, I was always offered foods or drinks that would make me ill. I learned to accept that was just par for the course.

You have to come to terms with the fact that you can't rely on others, however well-meaning, when it comes to your health. Anything you ingest, you have to vet, and you can't rely on others. This is unfortunate, but is just the reality of the situation. 

[Mari]

Hi Natalie14,

 To avoid having a reaction to small amounts of gluten in your food keep a supply of anti gliadin enzyme capsules to take with each meal. I use the product advertised here, GliadinX, but different brands are offered at your local pharmacies. 

One person suggested that you have your own gluten-free toaster. Also a rice steamer would be useful. You can cook a whole meal for yourself with the rice and water in the bottom and vegetables steamed above. You will need a small area of the kitchen that you can keep gluten-free. Make a plan that you can show your parents.

Start keeping a food diary. List the foods you ate daily  and write down any reaction or problems you had. After a short time you may see which of the dishes your parents made cause you the most problems and avoid eating them. You could ask your parents to keep a few frozen gluten free meals in the freezer for days when they prepare a meal that you would rather not eat.

I think that here at Celiac.com there is a forum for young people you could join and discuss your problems with others still living at home.

I hope these conts are helpful. Take care.

Marian

[Wheatwacked]

Here is a list to give them:  Products allowed/disallowed in the Gluten Contamination Elimination Diet

Are you taking any vitamins?  Living with Celiac Disease is not just about avoiding gluten.  It causes vitamin  deficiency.  A multi vitamin like Geritol Multivitamin has more than the minimum daily requirement of many of the vitamins.  As a recovering Celiac patient you need well more than the minimum daily requirement in order to replenish your depleted vitamins.

Almost all foods not in a box or bag will be gluten free.

For energy I drink Red Bull several times a day.  It has the essential nutrients needed to metabolize sugar into ATP energy in the mitochondria.  Nothing exotic like gensing.  Just essential vitamins, minerals, sugar and flavoring.  Taurine is an essential amino acid. Essential nutrient means we don't make it we must eat it.  Oddly, Red Bull lowers my high blood glucose level.  Don't drink High Fructose Corn Syrup or use sugar substitutes.  Our bodies run on glucose, not gluten.  Milk is good.  Potatoes are good.  Eggs are good.   I eat two Russet potatoes, 4 eggs, and 6 Brown and Serve Sausages alot.  Skip the toast. Not that nutritious and in a mixed household an easy source of cross contamination.  Skip the gluton free psuedo-gluten foods for the time being.  They are expensive and not really all that good for you.  Read ingredients list always and trust your gut.

      Potato chips are gluten free and contrary to popular belief the sodium to potassium ratio is 1:2; good for heart health according to the World Health Organization.  Sodium-to-Potassium Ratio as an Indicator of Diet Quality in Healthy Pregnant Women.  I ate a lot of Fritos at first. Hummus. Hershey bars with and without almonds, Snicker Bars. Hard boiled eggs.

 

[Wheatwacked]

I forgot one of my favorites.  M&M Peanuts washed down with a Red Bull Original.  I could easily eat half a pound. Food Heaven + Energy.  Forget donuts.

Milk chocolate (47%) covered peanuts (23%) in a sugar shell. Ingredients: sugar, peanuts, cocoa mass, full cream milkpowder, cocoa butter, starch, palm fat, glucose syrup, skimmed milkpowder, emulsifier (soyalecithin), lactose (milk), stabiliser(gum arabic), shea fat, milkfat, dextrin, colours(E100, carmine, E132, E133, E150a, E150c, E150d, E153, E160a, E160e, E162, E163, E170), glazing agent (carnauba wax), salt, palm kernel oil, flavouring, beetroot concentrate. (May contain:almonds, hazelnuts). Milk chocolate contains milk solids 14% minimum. Milk chocolate contains vegetable fats in addition to cocoa butter. 

Edited November 28, 2023 by Wheatwacked

[Scott Adams]

20 hours ago, Mari said:

I think that here at Celiac.com there is a forum for young people you could join and discuss your problems with others still living at home.

We have a Meet Up Forum here:

https://www.celiac.com/forums/forum/47-meet-up-room/ 

and you could also create a Club here:

https://www.celiac.com/clubs/