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How do you cook for family?

stacie1121

By stacie1121
in Coping with Celiac Disease

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stacie1121 Newbie
stacie1121
Posted

I have not been officially diagnosed with celiac or gluten sensitivity, but have been really sick over the past year.  It started last October, I had been very tired and dizzy but on Halloween I suddenly felt a pain in my chest and thought I was having a heart attack.  I went to the ER by ambulance because of the pain, dizziness, rapid heartbeat and feeling like I was about to pass out.  This happened several times, and each time it happened the ER discharged me saying it was anxiety because they couldn't find anything.  These feelings continued and within a month it had gotten to the point that I realized this was happening about an hour after I ate. Many tests later my regular doctor had found out my gallbladder was only functioning 14% so she recommended having it removed.  This is when everything got much much worse.  I was convinced I was going to die at any second.  I didn't know what was causing it and so I started avoiding all foods and lost approximately 60lbs.  I would be okay when laying down, but as soon as I stood up I had the rapid heartbeat, but the fatigue, dizziness, and chest pain was almost constant.  Back to the food, I cut out everything.  I was living off of carnation essentials, crackers, and soup, and couldn't even feel good just on those!  Eventually the doctor told me to stop eating fat because of the gallbladder removal, and avoid salads, raw vegetables, and other certain vegetables.  I didn't know what to eat, so basically I wasn't eating.  I ended up in the ambulance several more times because of this, and had low potassium.  I was basically starving myself because I didn't know what I could eat that wouldn't cause my attacks to happen.  Finally after a while, and many more tests, my doctor suggested maybe I had celiac.  I was eating crackers all the time by this point.  She decided to wait for my appointment with the cardiologist to do the testing, so I went home and stopped eating crackers.  I did some research that night, and celiac made a lot of sense.  Plus I read up on the gallbladder, and realized you need fat no matter what and that by not eating it I could have been making myself worse because the bile needed something to attach to.  I started eating chicken and potatoes (for the potassium) and nothing else.  I started to feel better!  Slowly I was up to eating soft vegetables in addition to the chicken and potatoes.  Then I slowly added non allergen foods to my list, avoiding gluten, dairy, corn, soy, peanuts, ect...  I was slowly feeling better.  When I went to the cardiologist, he said my heart was fine but put me on a beta blocker to reduce my heartrate.  Then I got much better.  So I thought I could start eating whatever I wanted.  Nope!  So I eliminated all of the foods again and slowly began adding them back. 

Because of my doctors suggestion of celiac, I saved gluten for last.  I added everything back without problems and when I finally added gluten back at first I was okay, but after a few days I started feeling sick again.  So I cut it out again.  I told my regular doctor this and she did some blood work and said my IgA? was normal.  She sent me off to the gastroenterologist because I also had other digestive problems.  He did an endoscopy and colonoscopy and did a biopsy for celiac.  He also sent me for other tests to check for things like delayed gastric emptying.   I had gastritis and ensophogitis but the biopsy came back negative for celiac.  I started eating gluten again and got sick again.  So I went back to my regular doctor who actually would listen to me, and she said it is still possible that it could be celiac or gluten sensitivity, and that you have to be eating gluten at the times of testing for it to come up positive.  She gave me the option to gluten myself really good and get retested, or to just follow a gluten free diet.  I did the later.  After $22,000 of medical bills after insurance, I chose the cheaper route.  I gradually got better and better on the beta blocker and gluten free diet.

Fast forward to the past month.  I left my abusive husband in October of this year, and am now on a tighter budget.  I wasn't 100% convinced it was gluten causing my symptoms, since it could have just been the beta blocker that helped me or the fact I was finally able to eat again!  So gluten free food is cheaper, and I started eating it again in November.  I started feeling really really bloated, felt like I gained a ton of weight, started getting very tired, felt very sick, and then on this past Thursday I had another episode where I felt like I was going to have a heart attack and my hands and feet turned pale, then purple.  I went to the ER again (my friend was with me and freaked out about the purple hands and feet).  The ER didn't find anything wrong, except I did have low blood pressure when I got there.  I told him that I had started eating gluten again to save money and he discharged me saying don't eat gluten.  4 days without gluten now, and I am already feeling better.  Bloating is going down and the heart attack feeling is basically gone.  I am 99% sure it is gluten but there is still a chance it is something else, like dehydration or the fact it had just gotten cold outside on Thursday for the first time this year, and last year when everything happened was right about the time it started getting cold outside.

So back to the reason for my post, I am going to give this a go again with gluten free.  Now that I am getting divorced, it doesn't make sense to me to make multiple meals, one for me and one for my teenagers.  I don't want to force them to go gluten free, but I would like to make just one meal at a time.  My plan is that I can get them gluten foods, but for dinner I will make a gluten free meal.  My boys are very upset about this.  They say I shouldn't force them to be gluten free just because I can't have it.  I moved into an apartment that has a very tiny kitchen, with very little counter space.  I can't designate a gluten area for their food, because there is so little area to start with.  I don't have enough space for storing gluten free pans, pots, ect either.  Snacks is easy, they can have their premade gluten snacks and I can still eat gluten free and cook only gluten free.  They just don't get it.  They say I am being selfish and forcing them to go gluten free.  Im not!  I just want to cook only gluten free.  Does anyone have any suggestions on how to cook gluten and gluten free foods in a tiny kitchen without cross contamination?  Do I just tell the boys that I make the money and buy the food, am not making them give up gluten completely, and this is what I am doing?  My ex didn't understand either, and made me make meals separate from theirs too.  I think they have it in their mind that gluten free meals would be bad. 

Sorry this was so long!!!!

Edited to add that I also have GERD and am taking nexium

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squirmingitch Veteran
squirmingitch
Posted

Ask your boys if they enjoy having a mother. Ask them if they would rather have a dead mom so they can eat gluten or a live, healthy mom & they can still eat gluten; just not in the house. Ask them if that sounds selfish and who is/are being the selfish one/s.

They can have gluten at school, they can have gluten cookies & snacks, they can have gluten at restaurants and at their dads house or friends homes. YOU need a safe kitchen for YOU. Tell your boys that one or all of them may present with celiac and they will be forced to eat gluten free for life so they should not judge lest they be judged. Celiac is a genetic disease and your boys should be tested every 2 years in the absence of symptoms & immediately if symptoms present. That applies to all first degree relatives so your parents, siblings are on that list.

Please read our Newbie 101

Boy, you sure got screwed on the testing didn't you? If only they had told you BEFORE you got tested that you have to be eating gluten or you get false negatives. I'm so sorry that all happened to you! Unfortunately it's an all too common story.

Welcome to the club.

stacie1121 Newbie
stacie1121
Posted
  • Author
19 minutes ago, squirmingitch said:

Ask your boys if they enjoy having a mother. Ask them if they would rather have a dead mom so they can eat gluten or a live, healthy mom & they can still eat gluten; just not in the house. Ask them if that sounds selfish and who is/are being the selfish one/s.

They can have gluten at school, they can have gluten cookies & snacks, they can have gluten at restaurants and at their dads house or friends homes. YOU need a safe kitchen for YOU. Tell your boys that one or all of them may present with celiac and they will be forced to eat gluten free for life so they should not judge lest they be judged. Celiac is a genetic disease and your boys should be tested every 2 years in the absence of symptoms & immediately if symptoms present. That applies to all first degree relatives so your parents, siblings are on that list.

Please read our Newbie 101

Boy, you sure got screwed on the testing didn't you? If only they had told you BEFORE you got tested that you have to be eating gluten or you get false negatives. I'm so sorry that all happened to you! Unfortunately it's an all too common story.

Welcome to the club.

Thank you!  Yes, I do feel like I got screwed with the testing.  So much money down the drain and still no definite answers!  Thank you for your reply, I agree and just needed to hear that I am not being selfish and not asking too much by wanting to cook only gluten free.  They do have a good chance of getting celiac, it does run in my family.  One of my uncles and my cousin (his daughter) have celiac.  They both also got tested for the gene for celiac and both had it.  My grandpa (my uncle and moms father) had symptoms which make me believe he had it undiagnosed, and my mom and sister have some of the same symptoms.  Also, one of my boys was diagnosed as ADHD which I read could be associated with gluten?  All I know, is I feel much better without gluten, and the symptoms I have during gluten times are very scary.  I wish I had the diagnosis though because it is too easy without the diagnosis to keep testing myself to make sure it really is gluten, even though it all points in that direction!

cyclinglady Grand Master
cyclinglady
Posted

I am sorry that you did not receive proper treatment.  You've been through the wringer!  But now you can move forward and heal.

I just want to add that our home is 100% gluten free.  My hubby went gluten-free per the rather poor advice of his GP and my allergist.  It worked though.  Who else would stick to a gluten-free diet for 15 years?  Does he have celiac disease?  We don't know as he refuses to do a gluten challenge in order to get tested.    Who can blame him?  He'll get very sick!  I was diagnosed formally almost four years ago (time flies!).  Our house became gluten light when hubby went gluten free, but gluten was still allowed.  I was the only one in the kitchen who handled food.    When I was diagnosed, our home became 100% gluten free.  Why?  Because I needed a safe place to hang out.  A place I could relax and let down my label-reading guard!  Besides, our kid was old enough to start cooking and well....she's a kid.  She'll make a mess and we could get GLUTENED!   The risk was too great.

Our kid?  Too bad.  She's gluten free.  I do feed her gluten (factory wrapped foods) for her lunch.  I make sure I feed her gluten daily (stop by fast food or friends) when I am getting ready to have her re-tested for celiac disease since it could develop at any time.  Her best friend packs extra sandwiches and that's a treat.  Even our dog and cat were on grain free diets!  

But the reality is, she has learned to like gluten-free foods.  Yep. She'll take that burger wrapped in lettuce over one in a bun.  Really.  She'll also request my gluten-free Chocolate Mayonnaise Cake over any store bought bakery cake any day.

Why the hard line?  Our health is most important.  Health is everything.  We also pay the bills.  We rule.  She's a kid.  She has no rights.  We are just obligated to feed, shelter and seek medical care for her.  Of course she's a fantastic kid.  She's respectful.  She's kind.  She loves us and we love her.  But someday, she'll be gone and on her own.  Then she'll be able to do whatever she wants and that's when she is paying her own way and not when she's 18.  As long as she takes money from us and she has to do it our way.  

You have a unique situation.  I urge you to seek counseling or advice as your boys no doubt have seen the way their father has treated you.  Some tough but firm love may be required.  Hard to do when you are feeling ill, but you need to set some rules up.  You are the head of your house and your rules apply.  

Cooking and eating gluten free does not mean eating that expensive junk processed food.  Stick with naturally gluten-free foods for a while (meat, fish, dairy (if you can tolerate it), veggies and fruit. You will heal faster! 

I wish you well.

 

 

Ennis-TX Grand Master
Ennis-TX
Posted

Stir-Fries, Soups, Baked meats and sides of stewed, roasted, grilled, sautes, steamed or boiled veggies......the combinations are endless, I love omelettes, and stir fries myself, I do not handle carbs or meats well. Now that winter is in huge pots of soup for a week flavoring differently with seasonings when served is cheap and effective. I have a friend who is picky who comes by sometimes to stay a few days, I normally fix her rice dishes like Mexican rice, rice and eggs, rice and meat with taco or chili seasonings, chili with a bunch of meats, or do sweet potato dishes like sweet potato fries, loaded sweet potato skins with turkey bacon and melted almond cheese. and I make a super melty cauliflower pizza crust made with almond cheese blended into the dough.

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