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Cost/guilt Of Having Celiac


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#1 eborzecki

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Posted 21 November 2011 - 05:38 AM

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...
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#2 ravenwoodglass

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Posted 21 November 2011 - 05:55 AM

((((((((((((((((((((((((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.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 samie

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Posted 21 November 2011 - 09:00 AM

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.
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#4 AVR1962

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Posted 21 November 2011 - 10:18 AM

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!!!
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#5 ElseB

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Posted 21 November 2011 - 04:03 PM

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!
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#6 cyberprof

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Posted 21 November 2011 - 04:54 PM

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: http://glutenfreegir...-peanut-butter/ 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: http://crockpot365.blogspot.com/

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.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#7 Reba32

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Posted 23 November 2011 - 08:59 AM

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.
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#8 Korwyn

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Posted 23 November 2011 - 10:05 AM

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.
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#9 cyberprof

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Posted 23 November 2011 - 10:27 AM

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!
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#10 Korwyn

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Posted 23 November 2011 - 11:19 AM

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:
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Undiagnosed for 20 years since first symptoms.
March 2009 - Negative Blood work
April 24, 2009 - Gluten-free
April 29, 2009 - Notably positive response to gluten-free Diet.
May 2, 2009 Dairy Free
May 6, 2009, Soy Free
May 27, 2009 Enterolab Results: Positive Anti-gliadin IgA, tTG IgA, Casein, HLA DQ2.2, HLA DQ8
June 4, 2009 Refined sugar free (except Raw Honey, pure Maple syrup)
June 29, 2009, Dad diagnosed Celiac by GI specialist via blood work and dietary response.
July 2009, Dad's gene test: double DQ8! Thanks Dad - I'll try to get you something nice for Christmas! :)
August 8, 2009 Really Soy free this time - Thanks Blue Diamond for the soy lecithin in the almond milk! :(

#11 cyberprof

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Posted 23 November 2011 - 11:42 AM

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!
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#12 Linus

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Posted 27 November 2011 - 09:32 PM

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.
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#13 Skylark

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Posted 28 November 2011 - 12:26 PM

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.
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#14 Ollie's Mom

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Posted 28 November 2011 - 07:21 PM

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!!
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