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Unable to Attain the Unattainable...or so if seems......

maclu5757

By maclu5757
in Coping with Celiac Disease

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maclu5757 Newbie
maclu5757
Posted

I was diagnosed a little over two years ago with Celiac Disease. Did I ever consider that was what was wrong with me? Not a chance! I had been very tired and having a lot of stomach pains. With my family's history of gallbladders, or lack there of, my doctor sent me to get mine tested to see if that was the problem. Nope, of course not! Why would it be that easy? When I went back to my primary care, she referred me over to do a endoscopy and from that, the doctor said, "Hey you have Celiac Disease. Let's get some blood work to make sure." Sure enough, the blood work came back and I could no longer eat gluten.

One does not simply stop eating gluten. I mean, of course I started out really strong, and I did pretty well for about a year. I read labels and didn't eat out much. I mean, I was sick right? I needed to take care of myself right? I guess that's a negative.

This last year, I jumped head first off of the wagon and I cannot seem to get back on. I mean sure, I  recognize the fact that I could get more sick, and I know that I can probably have a ton more energy if I just stopped, but I JUST CAN'T AND I DON'T KNOW WHY!!! Is it the money thing? Is it the fact that I ate gluten for 24 years and then "poof" none for you? I mean I just don't know what the deal is. I have the loss of energy, I have the stomach and bowel issues. I am sure that is where my headaches come from, but I am just so lost. I just don't know what to do.

I mean, it's not like I buy things with gluten in them. I look at all my labels still and I cannot tell you one thing in my house that has gluten in it. I live in a small town, with one grocery store. They offer a few things, but not a lot and most of it is processed. I have to go a ways away to get things I can eat, so a lot of the times, I don't buy groceries, because I don't have the time or the money. We also have an old time general store in town that sells gluten free flour and things like that (I really want to start making my own bread), but when you work 3 jobs how do you get the energy to cook? Isn't it easier to just go through the drive through, and live through the pain? 

One thing that doesn't help is the fact that this whole "gluten free diet" thing has become such a fad. I mean come on! I say I am gluten free and people just stare at me. It is easier to order something with gluten than try to defend myself, AND, let's not get me started on my family. I mean they love me and they do their best, but it is so difficult to eat gluten free when they are sitting there eating stuff that is filled with gluten. I mean they shouldn't be punished for my issues, right? But, it is so hard!

My grandma, God lover her, does her very best for me. If we are having a family dinner or something, she asks me about 20 times if I can eat this or that. I hate to put that much stress on a simple Easter or Christmas dinner. I mean, why do I have to be the pariah of the group? Why can't I be normal? I just want to feel normal, but I want to feel better and I want to live my life without stress of future illness. I just cannot find the willpower to stop eating what I cannot eat. 

I am at my wits end, and I am not writing this to get sympathy or even negative comments (I give myself enough of those). I just could really use some help and guidance in this whole situation so that I can start to feel like myself again. 

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tessa25 Rising Star
tessa25
Posted

There are definitely things you can do to make it easier on yourself. But all of my ideas seem to cost money and involve cooking. But I'll give it a shot anyway in case you haven't already thought of it.

I would buy a small chest freezer and put gluten-free foods in it. Canyon bakehouse sells their fantastic bread and bagels right on their website. You can just buy a case of it. Then if you ever get in the mood for a sandwich or bagel the bread's right there frozen in your chest freezer. If you get invited to somebody's house for dinner find out what their cooking and make your own similar version of it. So for Easter I would make ham, potatoes and broccoli and bring that with me. So when everybody else is eating a fantastic Easter dinner I'm also eating a fantastic Easter dinner. I have other food issues and before celiac I was invited to a friend's wedding. I wasn't going to be able to eat the food they were serving so I made similar food at home. They were serving lamb, ham, vegetables, potatoes. So I brought ham, corn and potatoes with me and heated it up when everybody was going to the buffet to get their food. So when everybody else was pigging out on this great wedding dinner I was also pigging out on a great dinner. And nobody would have noticed if they didn't try.

Sometimes you just get in the mood to have a frozen dinner and just don't feel like cooking something. There's two ways you can go about this. I happen to be addicted to Udi's chicken Florentine and think that their broccoli kale lasagna is very good as well. So I'd stock up on that in that chest freezer. glutenfreemall.com has tons of stuff. On Sunday you can make a weeks worth of food and freeze a lot of it in individual portions. After a few weeks you will have several different meals in the chest freezer that you made at home. You can eat those on weeknights when you're too busy to cook.

In my family Friday night was always eat out fast food night. McDonald's, Burger King, pizza, fried chicken. So for pizza my plan is to purchase Etalia New York style pizza crusts. Purchase some Escalon six in one crushed tomatoes and freeze in individual portions. Buy some Grande 50/50 mozzarella cheese and freeze in individual portions as well. If on Friday night if I am in the mood for pizza I'll just grab a crust, a portion of sauce and a portion of cheese from the chest freezer and make myself pizza in under 15 minutes.

When I get invited to a barbecue I bring loaded potato skins or batter fried chicken wings. Everybody loves them as do I. I by Pamela's gluten-free flour from Amazon six at a time. So I always have some available.

For the record, at the moment I am an extremely strict diet and cannot do any of the above. But will go back to that method in a few months.

Ennis-TX Grand Master
Ennis-TX
Posted

It will prolong your life....celiac is a autoimmune disease that  causes your own immune system to attack you. The longer your eating gluten the worse it gets, I mean all kinds of other autoimmune disease, food allergies, food intolances.

One day you could lose the ablity to eat carbs, or sugars, or become randomly allergic to tomatoes or corn all cause you decided not to be on road to healing I am not kidding here. I am allergic to corn, can not process meats, have another autoimmune disease that makes it so I can not eat dairy or CARBS/SUGARS.   I wish I could go back in time and go on a gluten-free diet a decade ago. Worse that could happen you could develop cancer or other complications and yes we have had this happen to a member before on our forums.

Think of it like this your just changing brand here I will give you some links to some gluten-free foods, and how to order them, You can even order alot of them online this should help simplify it for you. I suggest thrive, amazon, or one of hte other links from there, Many you can order from the manufacture.

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

 

knitty kitty Grand Master
knitty kitty
Posted

Hi!  Um, please forgive my quirky sense of humor.....

Celiac Disease is genetic...

All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses...

You need to set a good example if relatives are similarly diagnosed....

and then everybody will have to eat gluten free at family gatherings....

:)

 

TexasJen Collaborator
TexasJen
Posted

I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer. 

I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day.

Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas????

And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated. 

Good luck!

 

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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