Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Cost/guilt Of Having Celiac


eborzecki

Recommended Posts

eborzecki Explorer

I just found out I have Celiac last year, and was told to go on a gluten free diet...I am having a horrible time adjusting...Not only am I having problems because everything costs so much, I feel like I am putting a burden on my husband and the kids because I am spending money that he earns really hard, and he never signed up for this...I am a stay at home mom of two kids, and am not working at the time because daycare for them would be just as much as I make...I feel horrible about this, and even though my husband is telling me that all will be okay, I feel like a failure, like it's all my fault, and that he didn't sign up for this and he should be punished because of this...How do you deal with the guilty, and the cost, and everything else?...I just don't know how I will be able to live like this...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

((((((((((((((((((((((((HUGS)))))))))))))))))))))))))

You did not choose to have celiac, it was in your genes from birth. Your husband married you for better or worse and you are lucky he is understanding. Don't feel guilty about the cost as the money you will save on scripts and doctors appointments will outweigh the cost of the specialty foods you get.

The easiest way to save some money is to shop the outside aisles of the store. Go with fresh meats, chicken, beans, rice, fresh or frozen veggies and fruits. The diet can get expensive if we are going with too much prepared foods so keeping costs down can mean cooking from scratch more.

It is hard when you are staying home with the kids but really in the long run that can be a great experience. Although it was harder finacially for my family I stayed home when my kids were in preschool and looking back I am so happy I was able to be there as they grow up so fast. There can be much more guilt when you spend your childrens childhoods sick so in a way you are lucky (even though it doesn't seem that way now) they were little when you were diagnosed.

Are your little ones gluten free? If not be sure to get them tested periodically as celiac is strongly genetic. Also take care that the food you give them is not cross contaminating you. A cheerio gleefully swiped across your lips or picking up after gluten crumbs can get us if we are not very careful.

I hope your feeling better soon and do know that the feelings you are having are normal. Your in the right place to vent them.

samie Contributor

I understand about it being expensive. I am a stay at home mom cause its so expensive for daycare and my oldest daugher is diabetic so i cant really have daycares taking care of her and she is celiac to. I have celiac diagnosed 10mths ago. When we are tight on money i do try to skip going to the health food isle stores. I get alot of rice veggies fruit and some meats. If your are craving something sweet but cheap fruit roll ups and sme candy are gluten-free ( starburst snickers life savers and i think mid-night milk ways). Rice cakes are good to. It does get better.

AVR1962 Collaborator

I do understand.....I have been gluten-free since April, have been married 19 years. I have to always ask questions about my food when we go out. I am always reminding my husband of the things I can't eat if he tries to cook for me and I too feel bad. I even asked my husband just this past weekend if he was tired of me always having to be so careful. He was nice. It's an adjustment and I think you would vouche this not an option or a choice for us. Sometimes I think people see it a bit different when it is celiac but really is it any different than say, diabetes? If your husband had diabets you would be very understanding and do what was best for him and I have no doubt that he feels the same about your celiac.

It can be expensive if you buy the products. I don't buy too much of the stuff, make more of my own items. Probabaly cook healthier and spend less money on eating out!!!

ElseB Contributor

The easiest way to save some money is to shop the outside aisles of the store. Go with fresh meats, chicken, beans, rice, fresh or frozen veggies and fruits. The diet can get expensive if we are going with too much prepared foods so keeping costs down can mean cooking from scratch more.

In addition to this, try not to focus on replicating things, but gluten free. For example, gluten free bread is expensive. So instead of putting meat between two pieces of bread, eat it on top of rice instead. I think one of the best pieces of advice I ever got was this (in relation to packed lunches): stop thinking about what you can put between bread and think instead of what you can put in a tupperware container!

cyberprof Enthusiast

eborzecki, just chiming in to say that he married you (and you, him) for in sickness and in health. Just think if it was reversed, you wouldn't love him or care for him less.

And ravenwood (as always) is right that this way you may save yourself from cancer, diabetes and other EXPENSIVE and scary diseases that undiagnosed celiacs are more at risk for... doesn't mean every celiac gets them but there's a risk.

As for the $$$, besides the advice to shop areound the sides of the store and get away from bread being the wrapping, try corn tortillas or rice. Even rice noodles aren't too expensive. Many tortilla chips are gluten-free and substitute for crackers to use with dips. Serve naturally gluten-free foods like potatoes, plain fruits and veggies, meats, beans, rice.

If you like to bake, there are some easy treats that you can make that don't have lots of high-cost flour in them...like gluten-free flourless peanut butter cookies your kids will love: Open Original Shared Link Or Rice Krispie treats that use the new gluten-free Rice krispies (check the box for the new gluten-free label).

And then last, you've GOT read this blog: Open Original Shared Link

The author's daughter has celiac so all of these crockpot recepies are gluten free and easy! Great for family meals and timesaving too. Making your own spagetti sauce, beans, stews, etc. is very money-saving. She has a section on saving money.

Good luck and let us know how it goes.

Reba32 Rookie

gluten free packaged foods are expensive. But if you stop thinking about gluten free alternatives to the foods you used to eat, and just go with natural whole foods, you may notice your grocery bill will go down. Someone above suggested to stick with the outside aisles of the grocery store, and I will second (third?) that. Fruits, veggies, and unprocessed/unprepared meats are naturally gluten free and they're good for you and the entire family. Packaged and manufactured junk foods are still junk foods, whether gluten free or not.

In the winter months fresh fruits and veggies can be more expensive than when they're in season, but frozen alternatives are actually *more* healthy for you than non-frozen in a lot of cases. They are flash frozen soon after being picked, so more of the vitamins and minerals are kept, as opposed to produce that is transported possibly thousands of miles from sub-tropical and tropical climates at this time of year.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Korwyn Explorer

I just found out I have Celiac last year, and was told to go on a gluten free diet...I am having a horrible time adjusting...Not only am I having problems because everything costs so much, I feel like I am putting a burden on my husband and the kids because I am spending money that he earns really hard, and he never signed up for this...I am a stay at home mom of two kids, and am not working at the time because daycare for them would be just as much as I make...I feel horrible about this, and even though my husband is telling me that all will be okay, I feel like a failure, like it's all my fault, and that he didn't sign up for this and he should be punished because of this...How do you deal with the guilty, and the cost, and everything else?...I just don't know how I will be able to live like this...

I'm so sorry you are feeling overwhelmed. I understand because I think everyone has gone through that. I will tell you what got me through the first months. Reading 'Gluten-Free for Dummies', and going to a whole/raw foods diet. I couldn't cope with all the changes, trying to make our home gluten-free, what could I eat, what couldn't I eat, what about what my wife was eating, what about the grand-kids, worrying about cross-contamination, etc. I couldn't handle the stress. So I started eating only meats, home made salads, and fresh fruits. That way I knew everything was safe and I could start dealing with all these other issues one at a time. This also helped with the cost. Prepared gluten-free foods are expensive. Eating only raw/fresh/whole foods gave me time as I had to relearn how to cook and bake gluten-free which took some time.

Now to address some of the other things you're dealing with:

You are working. Full time. You are a MOM and a wife. That is TWO full time jobs. Your contribution to the home is immeasurable, because frankly, it wouldn't be a home for your kids without you. It sounds like you have a supportive and loving husband, and I commend him for that. As a husband and father, I will tell you that yes, he did sign up for this! When he said, "in sickness and in health, ... until death do us part" and "I do!", yes he did. My wife has had to deal with some issues in the last couple years, some illness, some major surgery, etc, and it never once crossed my mind that I didn't sign up for this, because I did. And I'll bet your husband feels the same way. If you can listen to what he says, and turn off the filter in your head that is processing everything he says through what you think he really feels you may realize he means exactly what he is saying.

I'm going to ask you a question: Why do you feel guilty for being healthy so that you can be there for your children and husband? Do you feel selfish for having to focus on yourself instead of them? Would it really benefit them for you to focus first on them, but have you sick, malnourished, with any of the hundreds of conditions and diseases untreated celiac disease leads to or predisposes you towards? Because then they would be caring for you, worrying about you, helping you, treating you, and so on.

Caring for yourself first, to make sure you are healthy in mind and body is the best thing you can do for them. Wracking yourself with falsely assumed guilt over this DISEASE, which you did not choose is doing them a great disservice and in my mind isn't fair to them or your. It devalues the love and concern they have for you. Because they love and care for you, they want you healthy and not sick and suffering. Not to mention that guilt (especially false guilt) will eat away at you, ultimately leading you to resent and reject them because you will convince yourself that is how they feel about you as a result of this. I'm oversimplifying this mental process a bit and making a few generalizations to make my point.

Do you attend a church or synagogue? Do you have access to a counselor of any kind who might be able to talk with you in a more trained capacity? Can you find a Celiac or GiG support group in your area? It sounds like you are trying to shoulder this entire thing yourself and that isn't healthy. I know you are reaching out to us here but there is something to be said for a physical shoulder to cry on.

cyberprof Enthusiast

Korwyn, a very wise post.

P.S. I love your signature, Korwyn. My dad has given me two genetic diseases (celiac and Fuchs Distrophy, a degenerative corneal/eye disease) so I just LOL'd at your signature!

Korwyn Explorer

Korwyn, a very wise post.

P.S. I love your signature, Korwyn. My dad has given me two genetic diseases (celiac and Fuchs Distrophy, a degenerative corneal/eye disease) so I just LOL'd at your signature!

Thanks. :) We also inherited a gene for deafness (I have 3 deaf siblings) through him from Alexander Graham Bell's wife. I remind him of that every time he brings up how we never listened to him as kids. :lol:

cyberprof Enthusiast

Thanks. :) We also inherited a gene for deafness (I have 3 deaf siblings) through him from Alexander Graham Bell's wife. I remind him of that every time he brings up how we never listened to him as kids. :lol:

Good thing I didn't get the deafness gene, as I might end up deaf AND blind!

Linus Newbie

Not to worry. The advice given so far is excellent. There is no reson to feel guilty. If anything, you have a lucky circumstance in that you are diagnosed. Knowing about celiac is far better than living with issues and never being diagnosed. I felt the guilt when my sister and my daughter were diagnosed right after my diagnosis. I quickly realized that I saved them much grief. You are lucky to have a husband who is supportive.

Skylark Collaborator

What Korwyn said!!! Health problems happen to everyone. You are being much too hard on yourself. Celiac is much easier to handle than many health problems, and by simply sticking to a diet you can be healthy to care for your children and be a great mom.

As far as saving money, I had to eat gluten-free on a student budget so I understand that issue. Processed gluten-free foods are horribly overpriced and I hardly ever bought them. The only thing I got was Bob's bread mix and an occasional Nana's cookie. Rice, rice cakes, potatoes, and corn tortillas are cheap, filling, and naturally gluten-free. You can usually get a huge bag of nice basmati or jasmine rice for $15-$20 at Asian markets or discount stores like Costco. I like to make soups from dried beans too. Split pea or black bean soup made from scratch is nutritious and filling and only costs a few dollars for big pot of soup. Since you're celiac, your kids are at risk for it too. Getting your kids used to rice and potatoes and limiting their gluten is a good idea anyway.

Sometimes you can find decently priced rice crackers too. If there is a Whole Foods in your area the 365 Brand rice crackers are very reasonable. You also need to learn about mainstream gluten-free foods like Chex, Dinty Moore stews, Progresso soups, Tater Tots, and so forth. For dessert skip the overpriced gluten-free baked goods and have some ice cream or a little chocolate.

Ollie's Mom Apprentice

Maybe I'm an anomaly here, but I spend less money on groceries now that I'm gluten free than before.

Eating gluten free for us means preparing all of our meals from scratch. Which means having a food plan for the week. I get my flyers every Thursday... so every Thursday after my son goes to bed, I go through the flyers and make up my shopping list. I only buy meat that is on sale. I only buy cheese when it's on sale. You name it, I wait till it's on sale - with the exception of fruits and veggies - those I buy every week regardless. But, they're really cheap anyway, especially if you load up on what's in season.

The meal plan gets to be second nature. It's fun now, trying to figure out what we're going to make for lunch / dinner all week based on what's on sale.

And yes - try to stay to the perimeter of the store. All the expensive processed, packaged foods down the aisles are the things that are so expensive. For example - think about how much a box of cereal costs (here in Canada it's typically $5-6 plus)... then think about how many breakfasts you could make that consist of homemade potato hashbrowns, eggs, and fresh fruit for the same price. I dunno about you - but I'd rather have the eggs, hasbrowns and fruit!

I am so inept at shopping in the aisles now that I spent 10 minutes looking for rice (I know, it's like a staple, but my hubby usually grabs it from down the aisle while I'm getting the fresh stuff) - and I couldn't find the rice crackers either. Sad but true!

And try not to beat yourself up about any of this. It's not your fault in any way. And think of it this way - getting into the habit of making all your meals will mean better quality food for your family. That's a HUGE contribution to your family's wellbeing!!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748

    Megannnnn
    Newest Member
    Megannnnn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
    • Scott Adams
      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
    • Clear2me
      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.