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I'm Going Bonkers Over The Diificulties Of Celiac Disease!


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23 replies to this topic

#1 MikeOhio

 
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Posted 24 May 2012 - 07:07 PM

I have Celiac disease and I live with my mom, not because I don't want to work, but because I'm disabled. The amount of money my State gives me for the type of disability I have is so low I'd barely survive on my own even if I lived in local low income housing which is known for having a lot of shady characters. The only grocery stores are locally Golden Dawn (high prices fairly poor selection) and Wal-Mart in a neighboring city. Anyway Almost all of the Great Value Products are labled "May Contain Traces of Wheat". My mom does not want to buy brand name products because they are more expensive. To me that label is basically saying it can't guarantee it won't make me sick. I don't think trace amounts will give me diarrhea but I have read that it will still harm me. We're Actually pretty poor. We live in a trailer. I save enough of my government money left over after I pay rent to get some things to entertain myself, I saved for quite some time to get this computer. But we don't have a lot of money to live on.

Anyway I got my mom to get a few things I wanted her to get. but then I found out she got Great Value Tortilla chips that have the dreaded "May contain traces of wheat" label and on the Preserves I got so I could make PB and J Corn tortillas "May contain Wheat" When I was by myself in the house I almost lost it. How do they manage to cross contaminate strawberry preserves?!?

Also I feel like my mom is really not supportive. After a positive blood test she still asks me if I really have it. I got diarrhea every day for a while and am getting it again. A few months before I tested positive on the blood test which was over a year ago i was shown to have low testosterone on a test. I never got treatment for that because I lifted weights and I felt in some small way that putting testosterone in my body would be unethical.

Since then I've had Chronic sinusitis and recurring epididymitis, along with diabetes and Hidradentis Suppurativa. I also have Schizophrenia. I don't know if being gluten free would help that or not but I sure wish it was easier for me to find out!
When I was just trying to eat low gluten mom would make spaghetti and tell me to eat just a little. A little food is not dinner and that was all I had to eat! The Gluten Free Food selection in this area isn't good, so maybe we didn't have gluten-free pasta back then.

Anyway I'm getting to the point where I feel like I WANT to just blow up and yell and scream. I've already used language that not that long ago I hardly ever used. I don't abuse other people but the difficulties of having Celiac without much money to spend on food in an area with poor resources for that is really getting to me.

And why does bread made with rice flour and tapioca flour cost $3-6 more than normal bread? I can't believe it costs them that much more to make it. It seems to me they are profiteering. Which makes it very hard for people like me. I read somewhere that in Europe gluten-free foods get written off on the insurance. That would make my life so much easier. Why can't America be more like that? I think if you have a rare problem the powers that be don't really care about you. Maybe because you don't count for that many votes.

Anyway if i can actually really manage to be gluten free any time soon I'll be lucky.
Sorry if I rambled but I don't have a lot of people to talk to.
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#2 rosetapper23

 
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Posted 24 May 2012 - 07:33 PM

I'm so very sorry that your life is difficult right now. You're right that having celiac in the U.S. garners very little assistance from the government. At a conference I attended five years ago, Dr. Alessio Fasano (a leading celiac expert) stated, "Woe to the American who has celiac and is poor." He said this because the food banks generally don't provide celiacs with gluten-free food, and the government doesn't subsidize our food as some countries in Europe do. There is a tax write-off, but you'd have to make enough money to justify filling out the long form.

Regarding your question on schizophrenia, you might be interested in reading this article:

http://www.celiac.co...Celiac-Disease/

My grandmother had schizophrenia, and now I wonder if she actually had celiac disease.

When it comes to gluten-free food, it actually is cheaper to buy natural foods (not processed foods) and prepare or cook your own meals. I can luckily afford gluten-free bread, but I rarely buy it because I no longer crave bread and choose to prepare/cook foods that are just naturally gluten free, such as eggs, salads, meat, etc. If you miss macaroni and cheese in a box, just let me know (by sending a private message), and I'll send you some from Trader Joe's. It's not expensive, and I would be happy to send some your way. I'm not wealthy, but buying it won't break the bank either. Just let me know....

I know that life is hard right now....but the future always holds hope and possible change. After following a gluten-free diet for a while, new horizons might appear for you.
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#3 MikeOhio

 
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Posted 24 May 2012 - 07:41 PM

I'm so very sorry that your life is difficult right now. You're right that having celiac in the U.S. garners very little assistance from the government. At a conference I attended five years ago, Dr. Alessio Fasano (a leading celiac expert) stated, "Woe to the American who has celiac and is poor." He said this because the food banks generally don't provide celiacs with gluten-free food, and the government doesn't subsidize our food as some countries in Europe do. There is a tax write-off, but you'd have to make enough money to justify filling out the long form.

Regarding your question on schizophrenia, you might be interested in reading this article:

http://www.celiac.co...Celiac-Disease/

My grandmother had schizophrenia, and now I wonder if she actually had celiac disease.

When it comes to gluten-free food, it actually is cheaper to buy natural foods (not processed foods) and prepare or cook your own meals. I can luckily afford gluten-free bread, but I rarely buy it because I no longer crave bread and choose to prepare/cook foods that are just naturally gluten free, such as eggs, salads, meat, etc. If you miss macaroni and cheese in a box, just let me know (by sending a private message), and I'll send you some from Trader Joe's. It's not expensive, and I would be happy to send some your way. I'm not wealthy, but buying it won't break the bank either. Just let me know....

I know that life is hard right now....but the future always holds hope and possible change. After following a gluten-free diet for a while, new horizons might appear for you.


Thanks. That's so very kind of you to offer. I think my mom actually did get me gluten-free mac and cheese before from wal mart but it's a little expensive to be buying all the time. I can't remember the brand but it tasted waaaay better than the gluten-free Pasta they carried.
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#4 Skylark

 
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Posted 24 May 2012 - 09:10 PM

I'm sorry you're having such a rough time. Yes, schizophrenia can be caused or worsened by gluten. One of the old names for it was "bread madness".

The specialty breads are part profiteering, but they are also paying for the gluten tests, dedicated gluten-free facilities, expensive specialty flours, and the cost of shipping it a long distance often frozen. In contrast, wheat bread is made from a grain that's largely government subsidized so wheat prices are artificially low.

I had to eat cheap in graduate school. Potatoes, rice, and dried beans and lentils are inexpensive nourishing staples. Even better they're naturally gluten-free without any risk of cross-contamination. Sometimes you can get a whole chicken really cheap on sale. Add peanut butter, eggs, whatever fruit and vegetables you can find on sale. It's summer so you can even try growing some from seeds if you have a sunny spot where you can dig or put pots. You will probably have to do some cooking - it's the best way to eat cheap and to make sure your food is really gluten-free.

Like you, I can't figure out how they would get gluten in preserves so it seems like a cover-your-ass to me. As for the chips, do you have any way to watch sales or clip/print out coupons to make the name brands more affordable?
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#5 MikeOhio

 
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Posted 24 May 2012 - 09:41 PM

I'm sorry you're having such a rough time. Yes, schizophrenia can be caused or worsened by gluten. One of the old names for it was "bread madness".

The specialty breads are part profiteering, but they are also paying for the gluten tests, dedicated gluten-free facilities, expensive specialty flours, and the cost of shipping it a long distance often frozen. In contrast, wheat bread is made from a grain that's largely government subsidized so wheat prices are artificially low.

I had to eat cheap in graduate school. Potatoes, rice, and dried beans and lentils are inexpensive nourishing staples. Even better they're naturally gluten-free without any risk of cross-contamination. Sometimes you can get a whole chicken really cheap on sale. Add peanut butter, eggs, whatever fruit and vegetables you can find on sale. It's summer so you can even try growing some from seeds if you have a sunny spot where you can dig or put pots. You will probably have to do some cooking - it's the best way to eat cheap and to make sure your food is really gluten-free.

Like you, I can't figure out how they would get gluten in preserves so it seems like a cover-your-ass to me. As for the chips, do you have any way to watch sales or clip/print out coupons to make the name brands more affordable?

Thanks. I just bought a bag of potatoes and I have a little rice. Potato's are ok and I can stand rice in limited amounts. I really don't like beans though. It may come down to needing to eat them for sheer nutrition. I think I found a brand of tortilla chips that is gluten free that is somewhere between the price of Great Value and What I wanted to get originally, Tostitos. Hopefully Santitas are cheap enough. We get the local paper but I don't think the local Wal Mart takes online coupons. I think we tried to use them before and they wouldn't take them.

Maybe they didn't want to budget the money to gluten test the preserves so they put that it may contain traces of wheat. Still I'm not going to continue to get that brand if I can at all help it. Hopefully either Smucker's or Welch's Grape jelly are in the same solar system as far as price. It's too bad there's not a wider variety of generic products out there, specifically ones that gluten test.
I already read many of the articles I just meant I wish I could get gluten free to see if it helps.
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#6 tuxedocat

 
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Posted 24 May 2012 - 09:48 PM

I am on a limited income, too.

Are you able to at all prepare your own food?

What helps is that I've fundamentally changed the very way I approach food and this may mean that there are a lot of "conventional" foods that I do not eat (sandwiches are out of the question most of the time, for example) and that I have experimented a lot and "made up" a number of new foods that are not conventional but are tasty and meet my needs.

I simply cook from scratch most of the time. You can usually buy plain meat and vegetables and fruits and certain staples such as beans, lentils, rice. I don't bother with gluten free pasta, I just take a zucchini and a spiral slicer and serve the zucchini AS pasta. Very cheap and filling, one large zucchini will make a plate of pasta. You can serve your sauce and meat and cheese or what have you with that.

I learned to make Chinese congee (which is very cheap and easy to make) and eat that in the morning instead of the usual cereals. Here's a recipe:

http://chinesefood.a...st/r/congee.htm

I was on Atkins for a year and a half, many years ago; I didn't bother replacing my carby favorites, but instead, learned to like new things. There are a lot of foods I simply gave up on. This helped a lot. I understand if most people don't want to do that.

You can also make your own tortilla chips if you can get gluten free corn tortillas... just cut up the tortillas and fry them in oil. They're way tastier than the ones in the bag!


It can be harder though when not everyone in your household is on board.
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2007 - dx'd with Graves' Disease
Suspected DH (no biopsy)
Tested negative for celiac (after gluten free two months)

2012 - Gluten free again after suggestion it might help my thyroid symptoms. Many strange one-off symptoms cleared up. Brain fog gone.

#7 ravenwoodglass

 
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Posted 25 May 2012 - 02:45 AM

Believe me I know your struggles all too well. I also live on a nonexistant income. I do a lot of Thai Kitchen noodles, you can find them in the oriental section of most stores. I do those with just veggies and sometimes a handful of well rinsed canned beans. I'm lucky to live in an area with a Wegmans which helps as they label all their gluten-free stuff so I can get store brands. Do you have a food bank near you? While they don't usually have a lot we can eat they do generally have things liked plain rice, tuna and canned veggies and fruit. My local one also often has fresh veggies that the farmers bring in when in season and some will donate vension during hunting season. Just let the folks that run the place know you are celiac as with our numbers increasing as much as they are people are starting to donate more gluten free stuff and some banks will let you read labels to make sure what they are giving you is safe for you to eat. The place I volunteer at often will set gluten-free pastas and such aside for me. Do be sure to check that any meds you take are also gluten free. If they aren't then the pharmacist may be able to advise your doctor as to what will be safe for you.
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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)

#8 MitziG

 
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Posted 25 May 2012 - 03:31 AM

you are very likely still getting small amounts of gluten, and this is affecting your recovery. You sound very intelligent and capable, so this is where you need to use that and get creative and take charge of your own meals. Do not eat the food your mother buys or prepares.

Stick to a very basic whole foods diet. No one really needs bread- it is a convenience, and gluten-free bread is a huge budget buster! Same with gluten-free pasta. The suggestion to use zucchini was an excellent one that I intend to try myself!

It takes time and planning to live this way on a strict budget, but it can be done. I am working on it too as myself and both kids have celiac so our whole house must be gluten free. It is challenging!

Another suggestion I got was to make more stews and stir fries. That is definitely a way to make a little bit of meat go further, and you can make big batches and freeze it. Do you have a farmers market near you? This time of year you will get much better and cheaper produce than at the grocery store!

At first I didntt know how to cook much, I was so used to packaged and processed food. The reality of not being able to pay $8 for a tiny bag of gluten-free ravioli (and it took 2 bags to feed the family) was a good teacher for me though! You will learn to do this too!
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#9 christianmom247

 
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Posted 25 May 2012 - 03:34 AM

Be careful about the tuna that ravenwoodglass mentioned. Most of the brands I looked at had wheat in them! It's because of the broth they're in, I think. Canned salmon seems to be better, but be sure to read the labels. Best of luck--there ARE options out there that are affordable :rolleyes:
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Diane

Blood test positive for celiac May 2012
Biopsy positive May 11, 2012
Gluten Free since May 12, 2012

Diagnosed with osteoporosis July 2014


#10 ravenwoodglass

 
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Posted 25 May 2012 - 04:45 AM

Be careful about the tuna that ravenwoodglass mentioned. Most of the brands I looked at had wheat in them! It's because of the broth they're in, I think. Canned salmon seems to be better, but be sure to read the labels. Best of luck--there ARE options out there that are affordable :rolleyes:


I have never, ever seen a tuna with wheat in it. The broth usually contains soy, which I have to avoid, but there are varieties with just water or olive oil so as with everything else read the labels. Starkist in the gold can is one with just water and Wegmans recently came out with one also.
  • 0
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)

#11 mamaw

 
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Posted 25 May 2012 - 04:46 AM

I don't know what part of Ohio you live in but there are many support groups in Ohio...As with my support group we help the ones that have a hard time being able to purchase gluten-free foods..As another poster stated eating natural meats, cheese, veggies, fruits are the same price for everyone. It is the goodies & snacks that costs more..

I watch for gluten-free to be on sale whether it be in a store or internet & I buy when the sale prices are good. I know not much money but if you can buy a case ofbreaad, mixes, snacks that are gluten-free then you have begun to start a pantry of gluten-free .. It doesn't take hundreds of dollars to start. So if you can hang onto ten dollars a month & do this every month you soon will have money to order or buy gluten-free when its on sale to start a gluten-free pantry..Even five dollars!

I do know that some bakers/vendors will send you a gluten-free care pkg if you contact them...& tell them you situation..A few you might try is Enjoy Life Foods, Pamela's, full flavor foods,123 gluten free, better batter ,bakery on the main, Kay's Naturals ..
Food banks are starting to have some gluten-free so check with your area food bank. It has become a priorty for many these days...Also churches are always wanting to help someone as a way of spreading thier ministry. Call your local churches...

Quattrobimbi has cookies on sale for a $1.00 a bag, contact their site...

If you contact me by private PM & let me know where you live I maybe will know more ideas for you....


mamaw
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#12 dilettantesteph

 
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Posted 25 May 2012 - 05:01 AM

You can keep costs down by changing the way that you eat rather than trying to substitute gluten free products for gluten containing products. Have rice, potatoes and whatever produce is in season and less expensive. At the farmer's market I can get a big box of apples which price out to 10 cents each. At the grocery store they are more like 50 cents to a dollar each. If I can't eat them fast enough, I make a bunch of applesauce, again which ends up much less expensive than applesauce from the store and there is no may contain wheat factor. If you have some land you can try to grow some things too. Check out what is easy to grow in your area and start with that. It can take awhile to make the transition. I hope your health improves.
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#13 Jestgar

 
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Posted 25 May 2012 - 05:55 AM

I have never, ever seen a tuna with wheat in it.

Me neither.

I second (third? fourth?) the idea of eating regular food to keep down costs. You can add beans or lentils to dishes to make them stretch farther without really changing the taste. Mix a cooked potato into your scrambled eggs. Throw rice in a soup or chili to make it more filling, etc.
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#14 Gemini

 
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Posted 25 May 2012 - 07:01 AM

And why does bread made with rice flour and tapioca flour cost $3-6 more than normal bread? I can't believe it costs them that much more to make it. It seems to me they are profiteering. Which makes it very hard for people like me. I read somewhere that in Europe gluten-free foods get written off on the insurance. That would make my life so much easier. Why can't America be more like that? I think if you have a rare problem the powers that be don't really care about you. Maybe because you don't count for that many votes.


I truly am sorry that you are having such a hard time with this. It is annoying that gluten-free food products cost so much but there are reasons for it which have been stated. The cost of producing and keeping a dedicated facility is high so the consumer, as the user of the product, has to bear the brunt of the cost. I personally don't want the government getting involved directly with subsidizing food costs for Celiacs. The Rx foods that are sold in Europe that are covered under the type of medical program they have, from what I have been told by UK Celiacs, is not very good anyway and many purchase stuff off of shelf for better quality.

However, do you have food subsidies that are available to low income or the disabled in your area? If you cannot work, you should be able to receive these benefits from your state. If people that don't want to work can get them, they should be available to those who want to work but cannot and who also have serious food intolerance issues. This is a medically necessary diet.
There are cheaper ways to eat on a gluten-free diet but I understand how you would want to have variety in your diet and be able to purchase the things you would like to eat like everyone else. Have you looked into all the avenues for help in your area? Sometimes there are things you miss and might be able to take advantage of.

Best of luck to you!
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#15 GFinDC

 
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Posted 25 May 2012 - 09:19 AM

gluten-free processed foods, like breads, pastas, cookies etc are expensive for sure. IMHO it is better to eat mainly whole foods anyway, and keep the baked goods as a treat sometimes.

If you can get the large family packs of meat on sale it is usually reasonable to do that. Most groceries seem to alternate the sales so the chicken is on special one week and then the beef another, and the pork another. So if you watch for the sales you can save quite a bit of money. If you like fishing the summer is good time for that too. And it's fun!

Frozen veggies are often on sale and canned goods go on sale pretty often. When
I go to the store most of the items in my cart are things on sale. And many groceries have those discount cards now too, and they can save some money.

Some grocery chains offer delivery for food now too, like Giant and I think Safeway also. So you can take advantage of sales without going there if they deliver to your area. I don't know if Kroger's has that but you could ask. Some Kroger's have gluten-free sections now.

Juice is usually cheaper if you buy it frozen and mix it up with water yourself.

If you avoid the processed and baked goods and stick to whole foods, you also avoid many additives and preservatives and food colorings, which may be difficult for your system to process. IMHO it's less work for your liver to detoxify foods than it is chemicals.

My brother has pschizophrenia and is not on the gluten-free diet. He just won't consider it even. I wish he would because I think it could help him. But I have two of the stubbornest brothers made. Oh well. I hope you find some ways to improve things with your diet. Cooking your own meals is a good way to go.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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