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Coping With The Cost Of This Diet...


Jnkmnky

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Jnkmnky Collaborator
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VydorScope Proficient
We like our bread in this family.  Like I said, the kids act like they're being forced to eat worms when I make the roll-ups..  I haven't made them in at least a year.  I've got a no nonsense 8 yr old girl and a 10 yr old boy who know what they like.  I can reason with them and get them to eat SOME things...but they're at the point where they'll tell me their tired of this confrontation...the food tastes gross, they don't like it and I should realize everyone's tastebuds are different.  How can I get out of logic like that?  My 7 yr old celiac will simply starve rather then eat something he doesn't like. He won't even try to negotiate with me...he'll just sit there until I realize he's not going to eat it. I think of the three, the celiac kid has the sharpest taste buds.  The other two are more into texture.  If it's slimey, they're not eating it.  They won't even eat jello. It's cheaper and easier without the bread, but that's not going to happen in this house.  It was easier to feed them when they were younger and did what I asked... Nowadays, I'm dealing with confident personalities with multilple opinions, likes, dislikes.  It was WAY easier for me when they were little.  Ahhh.. the good ole days of being in charge!  ;)

<{POST_SNAPBACK}>

THAT I COMPLETLY understand. Even at two my son has the will of a ton of granite! Getting him to eat "good" vartiy, and all the things that he should is well constant battle of crativity vs pure will power. heh.

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luvs2eat Collaborator

The only specialty foods I buy are Manna from Anna bread mixes (by the case) and brown rice pastas. Everything else is regular whole food. Those two items are more expensive, but I only use one bread mix a week and don't have pasta that often either.

Altho... I'm not trying to feed kids. I can only imagine how difficult that is!!

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skbird Contributor

I don't know, it might not be fair that the prices are higher but then again, is it fair that we have to limit our diets, either? And is it fair that my migraine pills cost $16 each? I guess the "fair" argument doesn't hold a lot of weight with me - things aren't fair. :)

I'm no fan of meat roll-ups, either. Unless deli meats are hidden in lettuce, onion, avocado, mayo, and a big french roll, I'm not interested. But I have other things for lunch that are good - I cube up cheese like cheddar and put in a tupperware, then have a tupperware of nuts (usually walnuts), an apple and a tupperware of baby carrots. Grains have the least nutrients per calories/carbs of any food out there - we don't really need them. I have tried a few gluten-free breads and found most to be a disappointment. I do like the Food for Life millet bread - $5 a loaf. I also really like the EnerG Light Tapioca bread - that is about $2.50 a loaf. I make pizza crusts sometimes - using either the Chebe mix or rice flour (go to the Asian food markets or even the Asian food aisle in the grocery store and you can often find rice, tapioca and potato flours for cheap). I also eat Tinkyada pasta every so often - cheap at Trader Joes, not bad at the grocery store (was on sale last weekend $2.50 a bag).

If I want a bread-like product for breakfast, I make waffles on the weekend and then freeze them, and have them with peanut butter and honey spread on them. Or I'll have a rice cake that way. I also make up a big batch of rice on the weekend sometimes and eat during the week for lunch or for dinner - I realize kids can't do that at school, but I'm just trying to chronicle all my starches consumed. I get plenty of carbs with the yams, rice, honey, occasional pasta, quinoa cereal, etc, that I don't even remotely qualify as someone on Atkins (as I formerly was). I think most of my expensive grocery bill these days comes from getting wild caught Alaskan salmon and organic chicken, etc, not spending more on gluten free specialty items. But my rationale for this being ok is that I used to eat lunch out nearly every day and at least one dinner out a week, which I no longer do.

I don't have kids so I can't relate on the level of appreciating that other people will want other things, but I do think that dwelling on the unfairness of it all only serves to frustrate, rather than help.

Then again, I do appreciate a good rant! :D

Stephanie

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skbird Contributor

I definitely don't have any idea of how much it costs to make a loaf of gluten free bread. But I guess between the low-demand flours, the process of having a dedicated facility, special storage (most seem to require being refrigerated), and limited distribution, I am certainly not surprised they cost more than regular ones. How much more is something I can't know.

Additionally, the prices should start going down. 10 years ago they though 1 in 10,000 had Celiac. Now they know it's 1 in 133, and that doesn't even count for people like me who are not Celiac. As demand and awareness increase, the prices will go down. They are off-setting the price of their facility, etc at this point, is my thinking.

What brand was $7? I've not seen any that much. $5 is the most I've seen gluten-free bread priced for. I used to pay $4 a loaf for locally-made bread, I didn't ever get cheap bread like Wonderbread, etc, so I don't feel all that gouged by paying $4-5 for Food For Life. And I especially appreciate the EnerG Light Tapioca that I bought for $2.20 a loaf (bought 6 loaves online) - or $2.50 at my local grocery store.

I wouldn't even eat bread if it was $7! That's nuts!

Stephanie

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2Boys4Me Enthusiast

Kinnickinnik bread at my local grocery is $5.99 a loaf, looks like about 10 slices. I cannot bear the thought of paying that much for bread. I live about 3 hours away from the Kinnickinnik HQ, and I'd rather have friends near there stop in to check the price on their way down here than pay that much plus the shipping if I were to buy in bulk.

I spent $100 at the health food store for a variety of flours for blending and have been making my own hamburger buns. My son doesn't eat bread, but he'll eat a bun--go figure. I'd rather spend and hour or 90 min. making something than spend $6.99 for for 4 hamburger buns.

We do have a couple of bakeries about 30 minutes from my house that have a selection of gluten-free breads (they are not dedicated gluten-free bakeries though), but so far he likes the homemade stuff, so that's what we're doing. I do have the luxury of working outside the house only four days a week, so that gives me three days a week to bake.

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Jnkmnky Collaborator
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skbird Contributor

Thanks on the av... I was getting tired of my big goofy grin.

About Whole Foods - d'oh. Well, I have to drive 180 miles to go there anyway (round trip) and now that Trader Joe's is coming to my town, no reason to really do that anymore anyway. Probably has potato starch in it anyway. Talking about fairness (and not) the fact that a good majority of gluten free baked goods have potato in them really takes the wind out of my sails...

I would not buy bread that pricey. I would eat my own bricks made at home... or just not eat bread (that's the way I usually exist anyway...)

I would rather focus on what I can eat and afford, the rest just isn't worth my time...

Stephanie

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quantumsugar Apprentice

Whole Foods bread in Orange County is $7.99, but for the first piece of bread in months, it was worth it. Other than that, I'm just doing straight meat, rice, fruits and veggies right now. Even that's incredibly expensive, especially since I am one of those broke college students that used to live off of Top Ramen. It's been driving me and my budget crazy, especially since I'm still eating more than I used to, guess my body's making up for lost nutrition. Guess it's nice to know y'all struggle with this too, was starting to feel like I was the only one with crazy food bills.

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toxemicfrog Rookie

hi guys

cost is astronomical in australia . Loaf of bread is the equivilent of $8.00 american

$6.00 for 300ml bottle of marinade....so i too am trying to stick to fresh fruit and veges. I work in a butchery ...all my chicken, fish and meat is free thank god or I would be in trouble budget wise. Even the online stores here are very expensive and unlike canada there is no tax offset because i have to spend this ammount of money for bread etc. Sucks bigtime but a girls gotta eat and they no it....

have a great day :D

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SharonF Contributor

I'm the only celiac in my family, and we simply can't afford to have a gluten-free household. The kids don't eat meat, for the most part, and my husband lives on sandwiches. Spaghetti is a favorite, and it's far more cost effective for me to have my own spaghetti and for them to use the $.99 a package American Beauty brand.

As for the wraps/tortillas: I agree the corn ones are kind of gross. A woman at the Iowa Celiac conference (Katydid on here, I believe) demonstrated making tortillas in a tortilla maker with Kinnickkinnick pizza dough, without the yeast. They were great! So maybe that's something to try on the kids who don't like meat rollups.

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skbird Contributor

On tortillas - I think I read in the pamphlet from Chebe that there is a recipe for tortillas, too. Can't remember what you do...

Stephanie

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cornbread Explorer

I think the most expensive part of this diet comes into play when you try to replace grain-based foods with their gluten-free versions. I pretty much just eat grain-free, so I'm buying the same meats, fish, veg and fruits I always did, and feeling great. The few times I have gluten-free bread (or even naturally gluten-free grain products like corn tortillas or rice) I feel sluggish and get the same bloating that gluten gives me. Perhaps I'm slightly allergic to all grains? I dunno, but I seem to thrive on pretty much the caveman diet! :) My husband is eating low carb too, so our meals are easy, just meat or fish with veggies/salads. That said we are both adults. If I had to feed a fussy child I expect (expensive) gluten-free grain based products would be a big part of their diet, especially if they were used to eating that way pre-gluten-free.

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sillyken Enthusiast

I am so glad to see people who have been experiencing the same things. I go to a dietary shop in my town and I can walk out with only about 6 or 7 items and pay 40.00. The other problem is I got food stamps earlier this year and they don't take this into consideration. I couldn't even use the card they gave me at some of the specialty stores. That makes it even more difficult. If anyone knows a better way I'd like to know.

Ken Ritter

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Jnkmnky Collaborator
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deb.h. Rookie

I just got back from my health food store(in Canada) and I bought all the flours to make gluten free busiuts and crusts and banana bread and a few other things. it is a gluten-free all purpose four mix that I got form the book

Food Allergy Survival Guide LIving Well Without dairy, Eggs, Fish, Gluten , Peanuts, shellfish, Soy, Tree Nuts, wheat, Yeast and More by:

Vesanto Melina

Jo Stepanik

Dina Aronson

we'll see how the recipes turn out. just realized that the book is actually vegan but gives so many great recipes for Dips spreads and sauces and many other things plus lots of good infor on celiac and allergies.

ANYWAY the reason I posted. The total came to $80.00!!!!

The 5 kilogram bag of chickpea four was $35.00 and they didn't have any smaller sizes. At least i am set for a long time. i don't plan on making a habit of having junk food but I have three kids who really want to have something once in awhile and a husband who is feeling seriously deprived. I can eat fruit meat andveggies no problem but the rest of them need something more.

the cost of putting everybody on the diet (only my older daughter tested negative) is VERY VERY expensive. ithink over time it will cost less and less as they get used to eating healthy foods.

I already have eating salmon on rice crackers which they refused before gluten free. They seem to accept this pretty well and are slowly eating healthier.

Since our diagnoses were only through enterolab and diet I cannot get any relief form the government which is too bad because with us all gluten free i could get a little compensation.

I spend at least $1000.00/per month on groceries for a family of five.

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par18 Apprentice

I was diagnosed in May 2005 via a biopsy. It took me about four months of eating 3 meals a day to gain back 20 pounds. My wife and I converted our home to gluten-free right away. At first I ate a lot of gluten-free bread that we bought at the health food store. As I started feeling better I bought a Kitchen Aid mixer and started baking my own bread. I did not like the bread machine method. This has allowed us to save a little. With the price of gas going up any trips saved are welcome. My wife has been very supportive and we eat most of the same meals. I do most of the cooking and we base most of our meals on naturally gluten-free items. Eggs,bacon,grits for breakfast. Lunch consists of deli meats and cheese (approved) with potato or corn chips, raw veggies and or fruit. Dinner is a meat, starch (potato or rice) green or yellow veggies. Coffee, water, tea, soft drinks and milk make up the bulk of beverages. Most of my desserts are either ice cream or fruit. I have always liked corn bread so I make it often. I have had had no symptoms since I began gluten-free diet on May 2,2005. I feel better and weigh more (175 pounds) than I ever have in my 55 years. I understand your concerns of the price of food. I have eaten no meals out since I was diagnosed but will do so soon. I have not really missed certain foods because I feel so good now. Some of my favorite dishes like chili are made with no changes at all. It seems like we might be spending less money on food now because nothing is being wasted. I am semi-retired and wife works from home so meals are pretty easy. I play golf or work on projects just about every day so if it sounds like I spend all day cooking that just is not true. I just plan our menu a little better. There have already been 2 articles in the Richmond Times Dispatch the past few months of Celiac Disease and dining out. I am hopeful as awareness increases then our menu options will also. Best of luck to all.

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mommida Enthusiast

I joined a co-op, and I'm very glad I did. You have to think long term because you're buying in bulk. I'm saving on gas. I'm not impulse buying. I have no problem buying from the most popular gluten free brands. I can even afford the organic brands. Kinnikncik tappioca rice bread 21.5 ounce for $4.06 instead of $6 plus. www.unitedbuyingclubs.com You have to subscribe to the catalogue to get the pricing information.

Laura

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jenvan Collaborator

ooo, thanks for the info laura. now that i am in frontier (a coop company) i am definitely pro-coop! :D

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  • 1 month later...
pokerprincess Newbie
This summer I converted my entire family to gluten-free, though only one family member actually has celiac disease. It's pricey. I paid $7.00 for a loaf of WholeFoods bread. I paid just as much for 4 of their muffins. Kinda insane when you think about it. Now, technically, I can afford this. But honestly, I don't like paying that kind of money for necessities such as bread products. I can't imagine how younger people afford this...young adults in college, single parents... The officials making a stink about price gouging in regards to gas and other expenses in the hurricane areas need to be looking into price gouging of people with celiac disease. Maybe we should look into prescription *food* benefits along with the prescription drug benefits. Honestly, the cost of food for the celiac diet is comprable to a prescription drug bill every month. I'm just complaining, but I don't think I'm wrong. It's not necessary to charge $7.00 a loaf for bread. Let's be realistic. It doesn't cost them THAT much more to make a loaf of gluten free bread with a mere 16 slices in it. And I think it's funny that many American's cross the border into Canada to get their prescription drugs filled because it's cheaper up there and many Celiacs get their gluten free bread from Kinnikinnick in Canada. My friends choke on their coffee when I tell them what I pay a month for food. Or what I pay for pretzels. Anyone else out there outraged? Or am I alone in this bad mood of mine?

the prices will go down as the demand goes up. Did

you know that if you keep accurate records of

you food costs you can claim them on your taxes?

Hope that helps.

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jenvan Collaborator

poker princess-

that is true on the taxes. there was a thread on that a while back. can't remember the name now... there weren't many of us who tried to do it though. i believe you have to reach a certain $$ limit to claim and doing so puts you at a risk for being auditing etc...so you have to be very "organized!"

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. This immense reduction in pain lasted for a little over two years. The treatment still ultimately failed, but it is not their fault, and it is still the treatment that has given me the most relief to this day. Later on, I even went about three years with very, very good pain reduction, before the joint severely destabilized again. This field of dentistry is the last line treatment for TMJ issues before oral surgery on the TMJ. There aren't as many denists around who practice this anymore, and the practice is currently shrinking due to dentists opting for less espensive, additional educations in things like professional whitening, which have a broader marketability. Getting this treatment is also very expensive if not covered by insurance (in America at least). My first time was covered by insurance, second time was not, though the dentist took pity on me due to the nature of my case and charged like a quarter of usual pricing. Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). I didn't inform him because I thought it would be inappropriate due to not having a formal diagnosis. I was disappointed, because I had believed I had caught it BEFORE it had done permanent damage to my body. I had never suspected that my TMJ issues may be related to my other symptoms, and that the damage would end up complete and permanent. Luckily, I caught it about 6 months after my other joints started hurting, and they stopped hurting right after I went gluten free, and haven't hurt since. I of course did the necessary research after the results of the second scan, and found out that the TMJ is the most commonly involved joint in autoimmune disease of the intestines, and if mutliple joints are effected, it is usually the first one effected. This makes complete sense, since the TMJ is the most closely related joint to the intestines, and literally controls the opening that allows food passage into your intestines. I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
      Welcome to the forum, @SuzanneL! Which tTG was that? tTG-IGA? tTG-IGG? Were there other celiac antibody tests run from that blood draw? Was total IGA measured? By some chance were you already cutting back on gluten by the time the blood draw was taken or just not eating much? For the celiac antibody tests to be accurate a person needs to be eating about 10g of gluten daily which is about 4-6 pieces of bread.
    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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